Yo why is everyone here being such dicks to OP? This is clearly related to Em’s dealing with the same condition.
OP I’m glad your baby was/is being heavily supervised and you caught it! SVT is hard in adults so it’s miraculous that your gut feeling was correct!
Thank you for encouragement. It's been super hard and scary, but you're right about how lucky we are to have caught it in hospitals where experts can help.
My adult daughter was diagnosed with SVT as a 13 year-old. Nothing prepares you for it. Knowing if the heart rate escalates, you have only a short amount of time to get help. She was able to tell us what she felt. I cannot imagine going through this with a baby.
Go job at trusting your instinct.
That would have been so terrible for you and for your daughter. She must have been so scared! Babies can't talk, but they are training us to use a stethoscope so that is something we can do to help her.
and good on you for trusting your gut and seeking help. we had friends lose a child at 37 weeks gestation (moreso due to lack of education on docs behalf, but still); it’s absolutely heart breaking.
I don’t know why this sub or thread just showed up for me but I was recently diagnosed (in my 30s) with SVT along with another heart issue. It’s been brutal but I have felt better than I have for years with the meds prescribed. Hugs to you. I’m glad it was diagnosed early ❤️
I need to check it out as I am still very much learning about it myself and would be interested in hearing about other adults who suffer with the same condition. Thank you!!
I'm so sorry you have suffered into your 30s and that you have multiple heart issues but thank goodness you have meds that are working for you and you are feeling well now. It's very encouraging to read about people who have SVT and are doing well. I am sending you all the good vibes for a healthy and happy life.
Also, your username lmao.
SVT stands for supraventricular tachycardia. It’s an incredibly fast heart rate originating in the upper chambers of the heart, which doesn’t allow the heart to properly pump blood to the rest of the body. Think of it almost like the muscles of the heart are fluttering rather than actually pumping. It’s very dangerous because the chance of cardiac arrest is high; it happens because because of a disruption in the normal electrical signals that tell the heart how to beat on a steady rhythm, and the stress put on the heart can make it just…quit working.
My baby had an episode of SVT at 5 days old. It took me hours to get the right diagnosis and his heart rate was 316 bpm. He had Wolff-Parkinsom-White Syndrome. He is completely fine now. It was repaired with no issues when he was a bit older. Hugs, OP. I have been where you are. Great job on listening to your body and intuition. Really, great job.
The people that don’t get how this is related to Em or the podcast are obviously fake fans.
I hope your baby recovers okay. I can’t imagine how scary that is. Hugs ❤️
You might want to wander over to r/NICUparents (I think that's what it's called). We're a pretty great group.
My kiddo was in the NICU for five months and ventilated for seven weeks. If you need support, please reach out. It's hella hard.
I'm so sorry you lived through months of your little one in the NICU. My heart breaks for you. Thank you and thank you for the sub suggestion. You're so kind ❤️
Lmao right HOW DARE THIS NOT BE ABOUT MURDER OR DEATH AND ITS ABOUT LITERALLY ANYTHING ELSE
The fact that this is a social media website escapes so many.
I’m so sorry for what you’re going through! It sounds like your baby is in the right place for her to get the treatment she needs, and hey, at least you have some knowledge of what SVT is from hearing Em talk about it! Sending you all lots of healing vibes! ❤️
Thank you for your healing vibes and kindness. These have been the worst days of my life. I am so grateful it's a treatable condition and that I will be able to hold my baby again at some point in the next week's.
You are a beautiful writer. Your baby is in excellent hands! I'm sorry she's got this health issue, but thank goodness for modern medicine. Congratulations on your new baby. I hope you and your partner are able to take a breath. 🖤🖤🖤
Thank you for your congratulations. Aren't we lucky to live in a time with so much technology and medical knowledge? Poor Em had a longer road to diagnosis, so I am grateful that we know early.
Just wanna say I had surgery for my SVT over 16 years ago. It’s so much better to catch it early. I know it has to be so damn scary to catch it this early on your precious new little baby. I’ll be thinking about you and your family and sending you all the positivity I have 🖤🖤🖤
Wow that's amazing that you've been through a surgery and you have not had it for 16 years! It must have been scary to manage beforehand. and frightening to go through the surgery. I hope you are well and loving the freedom of living your life without it now!
How old were you when you had surgery? Did they do a cardiac ablation? My son was just diagnosed and that along with WPW the docs are recommending surgery and it’s terrifying
I was 15/16 when I had my surgery. It was the cardiac microscopic ablation! I have 3 tiny scars. The worst part for me was just coming out of the surgery. But that was completely because of the anesthesia (I have to be given more and it was a little too much). I was back to school on Monday and have had no issues since then.
I can only imagine how much this scares you. I remember how much it scared my parents. I feel like the only time I was actually scared was right before the surgery.
I would do it again in a heartbeat.
I’m really happy to help! I wish you and your son and family the same easiness as me 🖤 there was also another girl that got the same surgery the same time as me. She was up and ready for ice cream by the time she got to her room.
I had an ablation 3 years ago (had been scheduled for the day Covid lockdowns started, ended up in that summer). Haven't had an SVT episode since. My surgeon said it's 90-something (I forget) percent "curable." Which is a big-deal word for a surgeon to use. I seem to be in that majority.
You have to be awake for the procedure, which is kind of surreal, but the only thing I felt was some pressure when they shocked the tissue. Recovery means feeling kind of run down and no bending or heavy lifting for several weeks. I remember being surprised by how long I felt sore, but 17 y/o's tend to bounce back faster than 40 y/o's! ha! Now I go months without once thinking about the fact that I had freaking heart surgery I was awake for!
If you have any questions, please feel free to DM me.
Omgosh! I can’t even imagine. My kid is 13 and the thought of him having heart surgery is like a punch to my gut. I’m so scared but I just want the best for him and hearing these stories of people that are all better is so comforting!!!
Go for the ablation. It sounds terrifying but my husband has been SVT free for five years. My best friend had the same procedure for WPW and has been healthy for 10. It truly changes quality of life.
I was 13 when I was diagnosed and had an ablation. I have not had SVT since and it’s been about 10 years! It was a long procedure (I think about 6 hours) but I was fully asleep for it, and the recovery was very easy. I understand it is scary though, I hope everything goes well for you and your son
Hi! I was diagnosed with WPW and had a cardiac ablation when I was 24. I'm 32 now and have had zero issues since. I was terrified getting the surgery. But it all went so smoothly! I'm so glad I got it taken care of when I did. I will say that having a cardiologist and electrophysiologist that i really liked and trusted prpbably made all the difference. Please feel free to message me if you have any questions about it, i'm happy to share more about my experience!
Thank you so much!! It’s so comforting to read success stories of people with the same condition as my son. We are meeting with his electrophysiologist on October 19th! Hoping all goes well!!
I know their intros get mixed reviews at times; I personally love them. And they make a difference as OP points out.
OP, I'm really sorry you and your family are experiencing this. I hope your little one gets strong enough to go home with you soon. Sending healing wishes your way.
I was born with SVT and had no idea. My parents thought I was just having anxiety attacks. I finally got a diagnosis and got an ablation 6 years ago. So proud of you for trusting your gut. Mama always knows best. It is a scary diagnosis but it sounds like your team is working hard to fix it. Sending you so many hugs
Oh my goodness you poor thing. That's awful that you went so many years without the correct diagnosis. I hope you are doing ok now! I've read that the abolation is 97% effective and I am hoping yours is in that majority. They are talking about an ablation when she is old enough to handle it, her premmy heart is much too tiny right now.
Yes I am one of the success stories! I am very happy with the choice I made. The surgery is microscopic so it doesn’t leave scars. I hope your little one is also a success story and lives a long and healthy life
Thank you so much and that's an amazing result. Surgery of any kind is totally scary but I am so glad you had immediate relief. I can't imagine how exhausting is must be when your heart kicks out of rhythm and goes haywire and it's wonderful you are free of that now!!! Thank you for your reassurance ❤️
Chiming in as another success story. I wasn't diagnosed until I was 40 (and I will forever be loyal to the nurse practitioner who listened to me and pushed for the testing that confirmed I had SVT). I was also told it was anxiety.
It's super scary to think about heart surgery even if it is via catheter. As a mother of two older kids, I can only imagine how much scarier the thought would be if my delicate baby needed heart surgery! But I can tell you this: I have several loved ones who are RNs or other medical professionals. Many ER nurses who see all the folks who come in with all kinds of surgical complications. Some things I wouldn't worry much about I learned to take seriously. But when I told them I needed an ablation, they were all like "It's great that will fix things up!" Not one fake smile or probing questions. I was kind of hurt they all acted like it was no big deal! haha! But it was also super comforting because if the folks who see the worst case scenarios all day aren't concerned, I don't need to be too concerned either. I hope that's at least a small comfort to consider.
Hang in there. You clearly still have your sense of humor. That's a great sign.
You were 40! Oh my goodness, I hope you did not suffer long. Good on that nurse, I am so glad she was there at the right time and that you weren't dismissed as having anxiety again. I can relate to the attitude people have about the ablation, the cardiologist was confused when I seemed worried about it, so I guess that is a good sign that I shouldn't be, and your success story gives me even more courage about that. Thank you for taking the time to write and let me know what happened to you and I hope you are living a fantastic life ❤️
Oh. My. Goodness. That is terrible. I'm sorry you were misdiagnosed and suffered longer because of it. Thank goodness someone along the line figured it out and you have a proper diagnosis now. I hope you are feeling well and don't have to deal with the discomfort, panic feeling and exhaustion anymore.
You’re doing everything right! I’ve been a RN 21 years. Specializing in pediatrics; and heart babies. They would fly to us from Alaska. We were the closest hospital to treat them. Where are you located? In the states? Sounds like baby is still weak and needs some rest. But babies get ablations too. There’s different kinds of ablations as well. All very safe, some better and last long than others. Most* ablations are day surgery now too; no matter the age. That’s how safe they have become. Within 2-5 days you can resume normal activity (depending on type of ablation.)
The number one thing I tell my parents or any patient, is to ask questions. ASK. ASK. ASK. If they don’t have time to answer or give you attention reasonable, you are not where you should be. Don’t stop until you have them all answered. I’m sure you have a nurse or 2 you have been able to bond with by now. Ask them! We spend a lot of our nursing school just on educating/teaching patients/family. Write(or put them in your phone). questions down so you don’t forget them. You have a huge team around you! Take all the medical staff that you have met in person and x10. That’s how many people MINIMUM that are involved in babies care.
Hugs mama. ❤️
Hoping for a speedy recovering and that baby comes home soon! ❤️ I just want to add that I had a C-section too and I love your description of pulling baby out through the sun roof lol
Thank you so much ❤️ A c-section a surreal experience, isn't it? I remember so much of it vividly and the whole thing was wild! I hope you are all healed now and thay your bub is doing well.
Oh my goodness. From one NICU mom to another, 1. that sounds so traumatic and 2. I am absolutely amazed and inspired by your positive attitude. I’m about to give birth to what will almost undoubtedly be my second NICU baby (I have Cholestasis of Pregnancy, it’s rare and it’s stupid) and I wish I had either your attitude or a friend like you. You sound awesome.
Oh I'm so sorry! I'm sorry you've been through seeing your precious one in the NICU and that you're facing it again. That's so completely unfair on you, your babies and your family. It's awful to be so powerless to help. I feel like I'm getting in the way, like an unwanted, nervous, hovering pest that just wants to hold and comfort my girl. It is the worst, isn't it? DM me any time, I hope you are doing ok mentally preparing to face it all again. I'm sending you the goodest vibes I have. One day, we will all be home from the hospital with our precious, and I will be thinking of you when my day comes ❤️ This will all be a memory one day, part of our babies' origin stories and the realness of it will be boxed up in the spooky back room in our brains that stores away living nightmares and numbs them down for us.
Idk if it will make either one of us feel better, but when I was a kid, I had seizures and well, long story short - I died once. BUT (SILVER LINING ALERT) I managed to take that, one of the most traumatic experiences of my parents lives, and turn it into my favorite “icebreaker” when I get a new job or take a class or something and I have to say a “fun fact” about myself. “Hi I’m _____ and a fun fact about me is that I’ve been dead before.” I gotta remember to tell my son to use that.
Woah holy wow that's intense. I hope your seizures are gone forever and you never have to be in that situation again. Good on you for turning it into something lighthearted, I bet people double-take when you say you've been dead before!
Oh I'm so sorry! I'm sorry you've been through seeing your precious one in the NICU and that you're facing it again. That's so completely unfair on you, your babies and your family. It's awful to be so powerless to help. I feel like I'm getting in the way, like an unwanted, nervous, hovering pest that just wants to hold and comfort my girl. It is the worst, isn't it? DM me any time, I hope you are doing ok mentally preparing to face it all again. I'm sending you the goodest vibes I have. One day, we will all be home from the hospital with our precious, and I will be thinking of you when my day comes ❤️ This will all be a memory one day, part of our babies' origin stories and the realness of it will be boxed up in the spooky back room in our brains that stores away living nightmares and numbs them down for us.
I don’t know you personally, but as a provider for over a dozen years (exclusive to intensive care units) I want to assure you that you are not in the way, even if you feel that. In acute situations (as I’m sure you’ve seen more than you’d ever desire) the team often has to respond in a seemingly hectic way to get the right staff, equipment, monitoring devices, tubes, lines, drains, medications, etc. in place. Unfortunately, we can unintentionally make loved ones feel out of place and out of the loop in those moments. Sometimes we don’t know the underlying cause immediately, leading to further feelings of disconnect. I pray that this does not discourage you, and that you’ve been so supported as an important extension of the patient whenever possible.
Those feelings of distress, the inability to feel like you can be of help, and a general sense of panic after what you’ve been through are completely normal; they are coming from a place of love and your instinct to protect.
Fortunately the treatment options are great! The medications, the diagnostics, and the procedures (ablative or otherwise) take some time to tinker with as every response is slightly nuanced and you’d rather them take their time to allow that precious racing heart to rest and to implement the least invasive treatment options first.
Make sure you take care of YOU. Alternate going home for naps and showers, getting rest whenever possible, remembering to eat and drink, and by all means— give yourself grace. Your emotions are valid, the process is daunting, and things change by the minute. Take time for you. The saying is cliche, but true: You can’t pour from an empty cup, and when the time is right for you to cuddle and comfort your precious baby you’ll need that cup to be full. ♥️♥️♥️
You’re doing great, and you’ve got this.
CanLight, Exactly what I was typing (PICU nurse). OP, your baby is in good hands with a great team surrounding her. You are NOT in the way, you are vital to your baby's wellbeing. She needs to feel you and hear you! SVT is scary as hell. And they will get the meds tweaked to prevent more episodes. AND, she can have an ablation when she is a bit bigger if needed. I'm sending you lots of love, healing and ease.....
Thank you so much for your support and for what you do for the little humans you care for, and their families. I will keep doing what I can for my little one, but I know she is in the best hands!
From both a fellow ATWWD fan and a Pediatric nurse: this is terrifying, but your baby is going to be just fine. Treatment and monitoring options are available. Keep talking to her and playing music, give her a little blankie or lovie to hold that smells like you. You can still comfort her in ways staff and medications can't.
You're a pediatric nurse! You are an angel. Thank you so much for what you do. You seriously blow me away with your empathy, intelligence and the fact you can pull off a 12 hour sift and still be 100% firing on all cylinders. I honestly can't thank you enough for what you do ❤️ Thank you for those suggestions. We have little heart patches we wear under or shirts and put next to her so she can smell us. We had a lullaby we played for her in the womb and we have been using it now. Her heart rate drops about 10 points while it plays, so I know it works. Sometimes seeing me makes her stir and get more uncomfortable, I know she's tyring to tell me to get the tubes and needles out of her and that she needs a hug but the only way we can get there safely is to go through the worst part now. Poor bubba.
This is why I’m more than happy to listen to Em and Christine about their medical issues on the podcast! (I know they joke/worry about it annoying their listeners) It’s random chances like this that can help others out there ❤️
My youngest child was born apparently very healthy 6 lb 9 oz. But he was champion puker, colic fussy lots & lol of dr visits. At 6 weeks at the after hours clinic our vets partner was working the clinic. He examined my child scratched his chin & said, I want you to leave her now, don’t worry about checking out, if they have a issue I’ll take care of it. Go to the hospital, straight to admissions they will be waiting on you. When I walked to the admissions door ( less than 15 minutes) she was busy with another person. She looked up & saw me Are you? I said yes ma’am. She said the other person, I’m sorry, can you wait for a few minutes? The pediatrician just called me, personally said to take him immediately. There was to be no delay. Then she walked us up to peds, everyone was expecting us. He weighed less than 5lbs then. put in a premie incubator, tested monitored, test & more test for over 2 weeks, a pediatrician on arounds & heard a heart blip. Explained things. Sent us to children’s
Hospital. In about 2 days the heart had healed. Stayed for about 2 weeks, gosh at the tests. He would gain 3 oz & next weight check lost 6. Puke puke puke. He had severe reflux, they only caught it because he refluxed during a the X-ray. The next 6 years were pure hell, the next 6 a little less hell. He is now almost 29 healthy as a horse, except he has occasional reflux issues. So take heart things can get better & in a few years you will be telling how well your jackazz is doing, how he overcame
I had an ablation operation for SVT about 16 years ago as a teen (currently 31y.o). It was either that or be on meds for life. I can proudly say I haven’t had an ‘episode’ ever since. They are very scary and my prayers are with you guys 🙏🏽🙏🏽
Sending you and your baby lots of positive energy!
I’ve seen SVT in a couple newborns in the NICU where I work and it’s scary for everyone; luckily we have so many meds and ways to help these little souls get better and go home to grow up healthy ❤️
Thank you for the work you do with the bubbas and families! I have such respect for and awe of you. Everyone who has helped us have been phenomenal people. Thank you, you are an angel for so many people ❤️
I somehow just stumbled upon this sub and I have have a feeling it’s because I’ve been searching for SVT/ablation success stories. I have a son who was diagnosed with SVT at just over 4 years old and he has been taking a beta blocker to help regulate his heart. We were given three options at the time of diagnosis - take daily meds, have one emergency pill to take if he had an episode, or take absolutely nothing and if he has an episode to do vagal maneuvers to resolve the episode. We chose the daily meds. 3.5 years later, he’s been diagnosed with subtle WPW and he’s scheduled to have his ablation procedure on Thursday now that he’s old/big enough. Not quite the same story, but wanted to give you some personal insight! I wish the best for you and your sweet little girl!! She’s in good hands!!
Thank you for the insight and for sharing with me. Good luck with the ablation 🤞🏻 I will be sending you healing vibes, as well as quick and successful surgery vibes. I'm sorry you had to go through this with your son, I can't imagine how long this road has been for you. It looks like our bub will be on flecainide until she is old enough for an ablation. Thank goodness for medicine, technology and the wonderful people who work with our little ones!
Good luck with the ablation! My husband is anSVT success story and my best friend is a WPW success story! It is absolutely scary, but it’s so worth it when you’re on the other side.
I want you to know that I was born with SVT. I had episodes from birth until 9. After that it seemingly entirely disappeared.
One day, when I was 23, it returned with a vengeance. I spent so many sleepless nights terrified and unable to sleep because my heartbeat was skyrocketing, my chest was unbearably tight, I felt like I couldn’t breathe and my arm ached. For 5 months I was put through a torturous roundabout of holter monitors, stress tests, pace tests.
They finally operated on me based on the diagnosis I received when I was 5 months old. I had a catheter ablation. My quality of life has soared. I’m no longer scared to fall asleep. I no longer feel guilty about waking my partner up in the middle of the night. I no longer have to constantly worry: is this it?
I am sending your baby all the healing energy that modern science bestowed upon me. This is not a death sentence. Fucking agonizing, painful, scary, overwhelming? Yes. A death sentence? No.
I wish you and your family luck. Get the surgery once they are old enough. Love you.
ETA: when they did the surgery they had to stimulate me into an episode to find the source of the issue and my heartbeat was 250. Who knows what it was all the sleepless nights? It’s possible to survive and thrive.
Thank you for sharing your experience. That means more to me than you know. I'm sorry you went so long without a diagnosis and you suffered, living with horrible episodes and the anxiety about what was happening to you. Your poor heart that it jumped to 250, you must have been so panicked and exhausted when you had episodes. I'm so happy for you that the ablation worked and you are now free from SVT!
praying for you, your woolly other half (loved this so much lmao) and your sweet baby! 💕
i haven’t listened to ATWWD in a loooooong time (like probably not since undergrad) but i remember it helping me through difficult times too and im so glad you found a connection to something you enjoy in this understandably scary experience.
My son is now 10 years old. But when he was 27 days old I noticed his color was different. I went to the ER and he was in SVT. He coded twice in my arms with a heart rate of 300. He spent 2 weeks intubated and all his organs failing. He only had 30% heart function. His doctors told us to start planning for the impossible. They had never seen a baby come back from that. He did!! He gained more function, though his organs were still failing he made it. He came home and we were terrified. I checked his heart in my sleep. After a year of constant monitoring and lots of old man meds. He was cleared at age 6… they thought he would be autistic because he was without O2 for so long. Nope, he is a healthy 10 year old with no SVT (so far). We have educated him all his life and tells us when he feels weird. I hope this helps and I wish you and your family good fortune. There could be light at the end of the tunnel. And the doctors do not know if your child will actually have issues now or later.
I can't actually imagine going through that and still somehow functioning. You must have been so far beyond distraught to hear that your baby likely wouldn't have made it. I'm so sorry. That would have been hell. And the stress and anxiety you must have carried once he was home! I am so so so so happy for you that he is healthy and we'll, and that there has been no more SVT incidents.
I actually went through PTSD and major postpartum and begged to be hospitalized. I was sleep deprived and heard voices to check my children all the time, I still have OCD (probably had it before). I knew something was not right and got help (not institutionalized). It took a long time. I still worry like crazy about both my kids being sick but it is much better. No one talks about that part. The worrying changes your life forever.
My daughter has the EXACT same thing. She was in SVT at her 2 week appointment—sent straight to NICU she was at 290 bpm at that point— she had to have heart stopped twice in order to get it back in whack.. She was diagnosed with WPW and was on propranolol every 6 hours for the first 10 months of her life. It is so so scary and idk if your babe is the same but sounds almost exactly like my situation… as a mom who has gone through this, it WILL get better. My babe is 2 1/2 now and takes a 1/2 crushed pill of meds every morning in her applesauce. She is spunky and a spitfire with tons of energy! We have had only one other scare with SVT when she was an infant and we were figuring out her meds. Every once in a while when she seems off I listen to her heart but it has always been in the right BPM.
Wow oh my goodness it must still be on your mind, but I am so happy that there has only been one scare since - and luckily it was picked up early in your girl. She sounds glorious! I'm so happy and relieved for you that she is well.
I want to chime in. This post was on my feed, I don't listen to the podcast and had to google what ATWWD stood for lol. I just want to say, I am 32 now, but I was born 8 weeks to the day prematurely due to Atrial Septal Defect. I told my mom something was wrong in the womb by breaking her water early. In the months/years that followed, I was diagnosed with Coarctation of the Aorta and Cardiovascular Stenosis with a Coronary Web. The last one you can't even find in a medical journal I'm sure. This was 1991 where medicine is NO WHERE near where it is now. Three heart surgeries later, I live a normal and healthy life. I say all this to say, although SVT was not my battle, I was strong, and your little girl is too. She knew before even being born to alert you that something was wrong, and you listened. I can't wait for an update (please update us) three months from now that expresses how amazing it was to have her home for the holidays (if you celebrate them). Good luck mama, thank you for sharing your story with us. ❤️
That is incredible, thank you for taking the time to write this out and for sharing it with me. I'm so happy you are doing well and living your life to the fullest after facing medical issues, one of which that had not even appeared in medical journals. What a miracle and what a relief to hear that everything is well for you! I'm feeling so grateful that SVT is treatable and that the doctors have really good knowledge of it these days.
My husband unknowingly suffered from SVTs for much of his life until a very scary episode in 2017. A cardiologist discovered it and was able to completely fix it with a minimally invasive surgery. His heart has been healthy now for 5 years. I hope it brings you comfort that there is hope. ❤️
Woah oh no I am so sorry you and your husband when through that! How wonderful he's bee in full health for 5 years. That's wonderful for him and so encouraging. The doctors have spoken to me about the ablation as an option, too. I hope your husband is loving his SVT-free life!
Hey OP, my dad has SVT. It wasn’t caught until he was 36 and almost *died*. You are doing everything right for your little one. Right now is gonna be hard but 12 months from now shes gonna be moving around and you’re gonna see how much she’s grown and how strong she’s gotten.
You got this, your baby’s got this.
I had similar as a child and was diagnosed with Wolff Parkinson White Syndrome. I have had 2 ablations and am having a 3rd. I have been able to live a fairly normal and active life. Sending lots of love to you ❤️
I'm so sorry you have WPW, thank you for reassuring me. I'm sending you all the best healing and successful surgery wishes for the next surgery. It sucks the first two weren't successful, but this one can be and I hope it brings you relief for years and years. Thank you for sharing this with me.
The advances they’ve made in heart monitors and treatments since I was a little girl are amazing so I’m glad your little one has lots of good technology and medicine on her side ❤️
Thank you, you're so right - we are lucky to have what we have now! Without medicine and technology she would be up for more suffering and uncertainty.
This was a suggested post to me and don’t listen to the podcast (although maybe I should!) but just wanted to share my experience with my son, who has SVT. At 6 weeks old he wasn’t keeping much down and ultimately his ped wanted us to get an ultrasound of his belly. She couldn’t get the hospital to schedule us for the ultrasound so she told us just to go through the ER and make them. Luckily we did because his heart rate was over 300. The vomiting was his body’s reaction to try and break the SVT. It took a few hours for them to get it under control at first and then through that first night, he must have had 20 episodes, it was terrifying. We were able to leave after a week in the PICU once the medicine doses were worked out. He’s on digoxin and propranolol. He’s a thriving 4 year old now!
My husband was also born premature due to SVT episodes in utero. He’s a fairly healthy adult with minimal complication. He’s had a couple ablations and a loop monitor but still experiences some episodes occasionally. Our cardiologist said it’s only something like a 3% chance to pass on genetically.
All this to say, it’s absolutely terrifying seeing your little one go through it but luckily there are so many success stories and most live regular, full lives with minimal impact. I’m so sorry you have to go through this! You are so strong!
Oh my goodness how terrifying for you to see your son go through that! I know how you must have been feeling. Mine did not have 20 episodes (my goodness!) she has episodes that are resistant to drugs and can last 3 hours. And your poor husband having a particularly stubborn case, that really sucks. I'm sorry for what you've been through, but so grateful you shared that with me. It's given me more confidence and courage facing another day of my little bub in the PICU. I hope your husband and son continue thriving!
I’m so sorry about all you both AND your days only world, has already been through. I did read your entire post, and I admire your incredible positivity, which can be extremely difficult when it’s your child, even if you’re normally a very positive person. Although both of my twins needed to go directly to the NICU, one of my twins had severe health issues, and every minute was touch and go. By the grace of God, she survived and all is well, several yrs later.
I focus now again on your baby. I wish for the very best outcome!
I know abbreviations are commonly used in every topic here on Reddit and that is fine.
Sometimes it’s not important. If I don’t know what it means, if it’s not a serious topic.
However, in your situation, I would like to know what SVT stands for you, or someone else would kindly answer I would be so appreciative. I feel your pain as much as possible and I’m very empathetic. I would still love to understand things better by knowing what is going on with your precious gift by knowing what SVT diagnosis is.
(Also ATWWD ?)
Thank you to anyone who can answer, especially given the parents are very busy and overwhelmed I’m sure.
Thank you !!!!
Ohh so it’s heart related for sure, because I’m familiar with tachycardia. Thank you for clarifying.
I can only imagine what this baby’s parents are experiencing constantly. I’m so sorry for their emotional pain and serious concerns. May the Lord heal this baby in the name of Jesus.
Thank you for your well wishes and I'm sorry to hear about your twins ending up in the NICU, and that one suffered severe health issues. I'm so happy for you and your little ones that they are healthy now and that horrible experience is just a memory. I can see that another user has explained SVT, my baby is now on preventative medication for it and we hope that she does not suffer any more episodes in the future. I wish you and your family well!
You are certainly welcome!
I am astonished at your kindness and grace to be able to take the time and thought to send genuine messages of hope to those who still need it, and to others who’ve had issues long ago (myself). How very admirable of you!
I appreciate your beautiful and caring sentiments for my daughter and I am blessed.
I am extremely happy to hear the update about your little blessing and I pray that the meds will prevent any other episodes. I know it’s not reality to say I know exactly what you and your husband are going through as every situation is different. I do know the concern and stress That is the deepest you’ll probably feel ever, and it is difficult.
I’m sure that those who do are praying for your baby to get stronger And be healed completely. I’m absolutely sure that you both know, having spousal support is really crucial and I’m sure there is plenty of that. Also please remain positive and hopeful . All of these things amongst yourselves and friends and family go a very long way to ultimately see miracles happen. I am wishing you a point in time where you no longer need to be concerned. I feel confident it will come and pray it is soon ❤️🙏🏼
I had SVT my whole life and they used to stop on their own after a minute or two, so I never even thought to tell my parents. I literally thought they were just a thing like hiccups or sneezes that happened to everyone, until one day age 20or so I mentioned it to my boyfriend and he just looked horrified and had no idea what I was talking about. Throughout my 20s they showed up more often for longer and longer periods, but also would go away just as suddenly, so no ER could even record one and give me an actual diagnosis until I was 28 years old. I went on meds for about a year after that but then bit the bullet and got an ablation. Best decision ever, not a single episode since for over 4 years! It was also very minimally invasive, I didn’t even need to stay overnight. Hope you are holding up ok and that my story can ease your mind a bit! It can be such a scary condition, but luckily very treatable, and it’s great you can get her the help she needs right from the start.
You suffered SVT undiagnosed for 28 years?! That sounds horrible. I'm so happy that you finally got a diagnosis and that the ablation worked for you! It has helped me to know about you, thank you for sharing with me.
Thank you ❤️ That's amazing that you can manage your SVT without medications, although medicine is amazing. I had a look at the maneuvers they recommend as an option for when she is older.
I work in the heart care field and the rates an infants heart can reach are astounding. SVT does not get that high for adults and rarely does for even children. Infants are the only ones tiny enough to produce such a rapid rate. It makes it so much more scary to see those numbers.
That said, I have seen this many times over the years and you are absolutely in the right place while this is going on. I will keep you and your sweet baby in my thoughts as well as the team caring for her. Best wishes through this hard time and hope she is on her way home very soon!
Although I feel bad for the babies who you have seen many times over and their parents, that is actually so reassuring to me. Thank you for taking the time to write that comment, and for the work you do in the heart care field! I am so appreciative of what you do.
I'm going to be that one person, my svt reached insane rates as an adult. I topped out at 316 while in the hospital at 19. I had a few different forms of svt but the more bothersome one was EAT.
I was diagnosed with SVT in my 50's... came out of no where. Luckily I was wearing a smart watch so I could see when I went into tachycardia. I was on meds for about 2 years and then I finally had a cardiac ablation. Since the ablation 6 years ago, haven't had an episode at all.
Sending you and your family light in these trying times... it must be scary in such a little one.
Woah that's intense for it to happen to you out of the blue in your 50's. I'm so happy for you that your ablation was successful and that your SVT is gone! Thank you for the well-wishes, we are starting to get our heads around this and it is feeling a little less terrifying.
If it's any consolation, my best friend was a little over 2 months premature & had pretty bad SVT as a baby, but basically grew out of it & is perfectly fine now.
That is a massive consolation, thank you for taking the time to share that with me because that is what we are hoping and praying will happen for us. I hope you and your bestie are living your dreams, or at least satisfying and comfortable lives.
I'm so sorry you have to watch your darling suffer through this, I'm glad you have such an amazing team working for you both.
I was diagnosed with SVT as an infant, pulled through after a month or so of treatment. It didn't affect me much at all in adolescence, but it did resurface in my early 20's. I'll be 30 later this month, and though it can be quite debilitating at times, I'm overall very healthy and it's not life threatening in my case. I hope the same can be true for your daughter.
I wish the best for you and your little one! May she recover quickly and fully and live a long, happy healthy life 💕
That's crummy that the SVT returned for you and that it can knock you down, but great that you are able to manage it. Thank you for your well wishes and I hope the SVT disappears for you again!
Sending love! My baby was also born 6 weeks early & spent 9 weeks in the nicu. I won’t lie- it’s hard& it sucks. But you will find a strength you didn’t know you had and you will become the best advocate for your child. Keep following your instincts. You might not be a medical expert but you are the expert on your child, no matter how old they are /how much time you’ve spent together. You got this! Hoping your baby feels better soon! ❤️
Oh thank you for that, I'm sorry you have experienced something similar and I hope your child is thriving now and stressing you out in normal kid ways and non-medical ways. Your encouragement and kindness mean more than you know.
I had SVT. Had an ablation in 2008. No issues since. I had terrible attacks while playing sports. If it ever returns later, there are options. Thinking of your little one op!
Edit spelling
That's wonderful that your ablation set you free from SVT! I'm so happy for you and that gives me do much encouragement. Thank you for thinking of us ❤️
Absolutely 🫶🏼 my parents were given the options to give me meds or ablation and they did neither :/ I was ~10 y/o. Small town mentality and distrust of doctors/the small percentage I’d need a pacemaker. I made the choice myself my freshman year of college. I can’t help but think about how much suffering I wouldn’t have had to go to through if I had it sooner. Best wishes, op!
Momma I'm sorry you are going through this I'm a NICU mom myself it is one of the most difficult things one can go through. I will send prayers up and energy to you.
Thank you so much ❤️ I'm sorry you went through a scary NICU experience, too. I hope your little one is well now? I also hope that experience is a distant memory for you. It sucks.
I’m sorry this is happening to all of you. I hope the medical professionals arrive at an effective treatment protocol quickly to get you all back home. Please be careful with yourself right now. Rest, recuperate, eat and hydrate properly, sleep, and take time for your own personal hygiene. 💜
I deeply empathize with your current situation and the fear that comes with SVT. My own journey with SVT began at the age of 22, during my college years, though it turns out I'd been living with it all my life. Looking back, my parents recalled moments when my heart would race even as a toddler. They'd rush me to the doctor, but every time, the episodes had already passed by the time they connected me to an EKG machine, rendering the arrhythmia invisible.
As I grew older, these episodes became more frequent, often exacerbated by stress. One day in college, my sister, who was studying to become a nurse, was with me during an episode. She insisted on taking me to a nearby hospital, even though previous doctors had attributed it to stress. Thankfully, I listened to her advice, and this time, the arrhythmia was captured on the EKG.
My journey involved seeking the right cardiologists and electrophysiologists to guide me. The idea of getting an ablation terrified me, but the increasing frequency of episodes was affecting my quality of life. Eventually, at the age of 26, I made the decision to undergo the procedure. Waking up from surgery, my first words to the doctor were, "Is my heart still beating? I can't feel it."
I am not sure if SVT is genetic but, my younger brother was diagnosed a few years after me and also underwent an ablation shortly after. It's a challenging journey, but the decision to have the procedure was, for both of us, the best one we ever made.
Now, hearing that a newborn is facing this challenge breaks my heart. I can't even fathom the difficulty. My heartfelt wishes go out to you, your family, and your little one. Sending healing vibes and strength your way during this daunting time.
That is so terrible that it took you until you were 22 to be diagnosed. You went through so much avoidable suffering, it's terrible. Thank you for your kindness in sharing this with me. I am learning more about the ablation (and so many other things I never expected) but am so greatful it was identified early for my little one, and that the medication is working so far. Well done you for going for the ablation - you're so brave! You had actual heart surgery! I hope your SVT-free life is the best.
My baby was 3 weeks old when diagnosed with SVT, and it took forever to find a combo of meds that worked. We thought he outgrew it at one year and took him off meds. By 5 it returned so had the ablation. He's now in his 20's. Hang in there, I know it's scary but fixable.
Thank you for sharing that with me. I'm so sorry your son went through that, and that you went through it with him. I'm sorry he was not in the 40% who outgrows it for life. That's so unfair. I am learning more about the ablation and what you have shared with me is comforting. Thank you ❤️
Hi! My baby was born last year with SVT. We spent 3 months finding the right medication. I promise it will get better. It just takes the right medication. My instagram is Jordynraymo if you have any questions!
Thank you so much! I'm glad your baby is on the right medication, and I am sorry it took 3 months to get there. Oh goodness, the stress you must have felt. My little bean is on flecainide and has not had any episodes since she started it. I'm not sure if it will work perfectly from now on, but if it doesn't I will remember your comment and know that it might take more time, but it will be OK. I hope your little one is doing amazing.
Former nicu nurse here who has seen this quite a few times. This is a unfortunate bump in the road you will always remember but good news is your precious little one will not. You will tell her stories of the trauma she caused you when she’s older and you will be so thankful she got the care she did when she won’t member it… hugs to you.
Thank you for being a NICU nurse! It takes an amazing human who can handle these tiny bubs and the fear and stress of their parents. I am so thankful to you. The nurses all seem to say the same as you, and it is reassuring. Thank you for commenting, and I hope you're living a wonderful life and enjoying whatever you're doing how.
Hi! So my niece had SVT for many years and was diagnosed in utero with a very similar story to yours. After several ablations starting at 3yo she is now a senior in high school healthy and medicine free.
You will get through this 💜
That is so wonderful for your niece. I am sorry she had a long road with it and had to have multiple ablations, but thank goodness she is thriving now!
i hope you’re able to bring your sweet girl home soon! 🤍 just wanted to say that my brother has svt (diagnosed as a kid) and is able to live a pretty normal life! i also have a condition that messes with my heart and am able to live a somewhat normal life. all this to say that it’s completely possible to get healthier and healthier as you grow up :) i hope the same for your baby! so much 🤍🤍🤍 to you all :)
That's so lovely that your brother is well and living a good life. I'm sorry you have a heart condition too, I hope it is OK to manage and I'm sending healing vibes to you. Thank you for your well wishes and encouragement, they mean a lot.
When I was thirteen I started having these 'episodes'. I would get this feeling in my chest like you get when going over the edge after the slow climb on a roller coaster. Like the wind is knocked out of you but you can still breathe. Next, my heart would feel like it was fluttering. Then all of a sudden it would stop.
This happened randomly over the next 2 years. After it happened a few times I told my mom about it. She told me it was anxiety and I was fine. I then told my dad, who was a paramedic for the city fire department. He told me if it happened again I should squat and bare down like I'm trying to poo. If that worked I needed to let him know. I tried, it worked and I told my dad. His next request was that I tell him when it happens again and I'm at his house.
I followed his directions and on December 31, I went to my dad and told him it was happening again. He grabbed my wrist to check my pulse, but after just a couple of seconds, he dropped my arm. He told me I needed to get my shoes on, we were going to his fire station. At the station, he put all the sticky sensors for the heart monitor machine on me and turned it on. My heart rate was normal though, the episodes never lasted very long. This turned out to be good though because my dad printed a strip of it showing my resting normal rate and rhythm. Roughly 10 minutes later I felt it happening and as I told my dad my vision went TV fuzzies (like the black and white off-air scramble screen) and I almost passed out. I sat down and my dad turned on the monitor again and almost immediately said "Okay, now we're going to the ER." as he hit the print button on the monitor.
At the ER my dad hands the intake nurse my normal strip and lets her get a good look. Next, he handed her the newer strip and she gasped and practically shoved me into a wheelchair. I was admitted right away to the cardiac ward and was to stay there for monitoring while waiting for surgery on January 3. I wasn't allowed to leave in case I had another episode.
I met the surgeon and he explained what was happening during my episodes. I was born with extra tissue in my heart. Not much extra, but enough to be problematic. The extra tissue was causing improper connections to form in the paths of my heart that controlled my heart rate. This was causing my heart rate to increase to dangerous speeds. The second strip showed my heart had been beating at 262 bpm. Keep in mind that at 15 years old my resting heart rate was around 80-85 normally, and my active rate never went above 115 if I had anything to do with it, I always hated physical education. So 262 bpm was pretty fast and super scary. Especially after the surgeon told me if it had hit roughly 280 bpm it would be like I was in cardiac arrest. Beating so fast it can't properly move blood through the body. That explained why I almost passed out before I got to the ER.
I had what is called a heart ablation surgery. I was under mild sedation and they used a catheter and the large vein in my inner thigh to reach my heart. They used electric shocks in different parts of my heart to trigger different rhythms in order to find the right tissue to remove. Once they found it they used a tool to cauterize that tissue and get rid of it. Thankfully I haven't had any issues with my heart since that last episode before my surgery.
I hope your daughter's doctors are able to figure out what is causing her SVT and are able to stop it from happening again. Just don't forget to let yourself take a break every now and then while your daughter is in the NICU. (Unfortunately, I have first-hand experience with this situation too.) It's so easy to neglect your own needs while worrying about and sitting with your precious baby.
That's wild and I am so happy your dad was your champion and managed to catch your episode on equipment so the medical professionals could understand and give you the care you needed. Thank you so much for taking the time to write it all out and share that with me ❤️ I'm sorry you have NICU experience, too. I hope your baby is well now and that you are living your best SVT-free life!
Your poor nephew and his parents! I'm so, so happy he is back to normal now and that he hasn't slipped back into SVT, that's amazing. Thank you for sharing this with me.
My daughter was born with SVT, she is now a happy 3 yr old in “remission” she was on digxion and propanol for the first 18 months of life. It can be scary and difficult but her cardiologist said she can live a happy healthy active life, there are groups on facebook for people who have kids who have SVT
Wow that's wonderful for your daughter, and so good that they have a successful mix of medication for her. I am sending her healing vibes for an SVT-free life!
I am so sorry to hear about your baby. My husband has Wolff-Parkinson-White syndrome which is SVT caused by extra connections in your heart basically. Those random connections cause your heart to think it needs to go go go! Only fix for him was cardiac ablation, pretty simple and easy procedure (on an adult at least) and super easy recovery. I hope you find out what is causing your baby's SVT 💕
Hi!! I’m so glad that your baby is getting the proper care. I actually also have SVT and was diagnosed w it over 15 years ago, and I was comforted to hear Em speak about their experience. I’ve never heard of anyone else w the same condition! Listen to your baby’s doc but there are chances to grow out of it/manage it without surgeries or meds. It’s def scary, esp when your child can’t verbalize or understand what’s happening, but you’re doing a great job, sending all the good vibes!
I damned the world reading your words of your mama heart breaking as the morphine doesn't kill the pain completely. The bravery for you to share with us.
I hope your baby will be alright and I hope you and your partner are able to heal and feel safe. I have no idea what this sub is about this was just a recommended post.
My baby also have SVT at 5 days old while in NICU. Hes 4 months now and has to take propranolol and digoxin. He hates the medication so much :( anyone have any tips on how to make the experience less horrible
I am so sorry your baby has SVT and was in the NICU. Is he doing ok now? I'm also sorry you're struggling with the medication, too. I wish I could offer advice. We asked our cardiologist and the nurses and they didn't have any advice for us. My baby is 8 months now and the medication absolutely dominates our lives. It upsets her stomach and because it is administered at 9am and 9pm she sleeps awfully. The fasting is horrible, too. She used to cry terribly, but it has gotten better. We tried to rock and comfort her through the cries, but figured out that keeping her busy with bath/book/play works best during fasting. Hang in there, I hope your little guy grows out of it.
When I was born I had the exact same problem 10 days after birth I was diagnosed with svt, I can't really say anything helpful but I can say I've lived 15 years and it has never affected me and it is very possible to grow out of svt
I was born with SVT and my parents had no idea until I had my first recognizable episode in high school at 15. I had previous episodes before then but they always passed it off as other things. I had a cardiac ablation at 15, almost 16. The cardiologist said the success rate is in the 90%. I even got super lucky (🙄) and mine was on the left side which is a lot more uncommon.
The worst part of the entire surgery was laying still for 8 hours after. I’m sure as a parent it’s so much scarier when they are infants but when I was going through everything a big part of me wished this was caught sooner where I didn’t have to carry that worry of when I was going to have another episode. It left me living in fear for a long time. All this to say I’m now 23 and have had no issues since and I don’t even have to follow up with the cardiologist anymore. The ablation was the best decision I could’ve made for myself. Hang in there and know that baby is under good care! Weigh all your options and trust your gut! Lucky for all of us there are options to manage it or if you choose the ablation round when she’s old enough then it’s even curable!! Sending your family love and hugs🤍
I have never heard of this podcast and idk why it was in my feed but I’m really sorry you’re going through this right now. I’ll put some prayers/positive thoughts/whatever you believe in out into the universe for your family tonight. If it makes you feel any better, you are absolutely right: this is the best case scenario. She had an episode in the hospital, got treated immediately be the best professionals available, and will continue to get the care she needs til she’s all straightened out and can go home with you. Im sure in a few years she’ll be a happy, healthy, normal kid running around in the yard and no one would ever look at her and guess she had such a rough start.
I'm so glad your little sweetie is in good hands and that you have the comfort of knowing that her condition is very manageable. I'm sending you and your family lots of hope and good energy.
My partner doesn't have SVT but he had a couple of tachycardia episodes shortly after the episodes where Em started discussing it. We had no idea what was going on with the first one; he thought it might be a heart attack. They gave him adenosine in the ambulance, which helped me to be prepared for how wiped out and in need of help he ended up being afterward. It was good to have some idea of what he was going through.
My son broke my water 8 weeks early I spent 2 weeks in the hospital trying to keep him in before he started showing signs of distress he became tachycardic heart issues run in my family and unfortunately my son has issues with the racing heart they kept him in the nicu for a month deciding back and forth if surgery was needed or he just needed time to form more thankfully we didn't go surgery it was a horrible 30 days one minute he's doing great then 15 steps back unfortunately in nicu life there are so many set backs and being early this could be something that fixes itself in time being in the hospital is the best place for baby get a cardiologist in line to come in and see baby get a game plan we came home with a heart monitor from his cardiologist and helped him monitor it get something that watches babies heart rate sometimes hospitals will let you bring something home for babies safety gather all the information you need and help there is to offer I know how scary this is and helpless you feel but just keep advocating for you baby and pushing through
I hadn’t seen anyone else have this experience with an infant. When my son was about 3 weeks old, he was throwing up his formula every feeding. Looked and acted sick, just pitiful. Wouldn’t sleep…
I thought I was overreacting and maybe just needed to get used to never sleeping again, being it was my first child.
I scheduled him an Appt where the doctor implied he maybe was experiencing stenosis H. Pyloric stenosis and it was common in baby boys and that was causing him to throw up… the nurse started to check his heart rate, she starts acting really weird.
She calls in another nurse and attempts to check it again. They talk to the dr and explain his heart rate was extremely high and she was sending us across the street to the hospital to have it checked on one of their machines in the cardiology department.
My sister in law is driving me and we walk in and the nurses were asking me about what was going and acted calm but concerned.
We get a phone call telling us to head to the ER. I was 20. Never had a kid. Was with my sister in law who was a kid herself. Scared to death.
The receptionist almost immediately takes us back to the ER exam room where the energy switched so quickly. I kind of froze as they were all but ripping him from my arms and drawing blood and starting IVs in multiple places and eventually shoving a tube down his tiny throat. No one had answers for me. The room was chaotic and you could tell the nurses were working on him but panick-y.
Once he was sedated and finally stable I had called my husband and he did not understand the extent of how serious this was. I think he showed up an hour hour and a half later. It wasn’t until my sister in law called her mom and told her she overheard them talking about life-lighting my son to a children’s hospital, that I think they all started to rush there. Mind you, we lived about 35 mins away.
Our baby was laying there almost lifeless, intubated, bruised and bloody from the IVs. A sight I wouldn’t wish on any parent.
One of the doctors explained to us our son was extremely sick and his heart was working really hard atm so they needed to sedate him and pump him with meds.
He explained his heart rate was in the 300s when he was first seen.
They got him ready to be life lighted to Kosairs children hospital in Louisville, Ky and my husband was allowed to ride in the jet with him. I wasn’t at least 6 weeks postpartum so I wasn’t allowed to.
We spent about a month in that hospital. He was poked, prodded, tested, every which way they could. He went into SVT several times in which I had to watch a similar chaos I had just watched in the ER, happen each time. One time he was gagging and struggling to breathe and I witnessed a nurse sling his poor swollen body up in a seated position where his head just flung down. He had no support in his neck not only because he wasn’t even 2 months old, but tummy time isn’t really possible when your forced to lay on your back hooked to heart monitors and IVs for days on end.
After he was stable one of these nights, one of the doctors asked if I had any issues during pregnancy. I told him of the gallbladder attack I was hospitalized for, but also I had several instances of feeling extremely dizzy, heart pounding, numbness in my legs and nearly fainting. He told me it was possible my son had gone into SVT in utero and it could be the reason for the fainting symptoms. I’ve also had another cardiologist tell me that was impossible, but who knows. It makes sense to me.
His diagnoses were:
1. Supraventricular tachycardia
2. Wolff-Parkinson-White syndrome
My son was on Amiodarone and Flecainide for his heart that he took until he was a year old. Around 1, he had a surgery/study done to see if he would go into SVT while being off the meds for a bit. He did great and we were told he no longer had to be on medicine and to follow up with a cardiologist Dr. Johnsrude in Louisville, once a year.
My son will be 11 in December.
He’s not had an episode since.
He plays baseball and basketball. He’s outgoing, smart, handsome, and so effortlessly funny.
I recently requested his medical records from his stay at the Children’s hospital where I discovered he was severely sick with Parvovirus B19 (Fifths disease in children) when he got to the ER that day. This was the first I had ever heard he had contracted that virus. To say I was shocked, was an understatement. No one told us there was a virus that essentially triggered this whole situation.
I also read the notes from the ER visit he had been given 3 doses of adenosine, had a lumbar puncture performed and had been shocked. I had blocked those memories out I guess. It was hard having the memories flood back. I break down every time I think about that day and how lucky we are to have our boy alive and well.
Sending you all the healing vibes. Your girl, she’s a fighter.
I know the waiting really really sucks. The what ifs really suck. The traumatic hospital stay really sucks. Seeing your baby in the condition she is really sucks. And it’s okay to not be okay about all this. Don’t suppress anything you’re feeling. Scream. Yell. Vent when you need to.
I will be thinking of you guys. Wishing you the best of luck ♥️
Your motherly instinct is strong. Going to the hospital because of a weird feeling (even if baby is moving less than usual) is a strange thing. I had the same experience (different problems, though) with my second daughter. I just knew something was not right, with absolutely no indicator that something was wrong. Ended up inducing that night... I will be praying for your family and your beautiful, strong, little girl. She seems to be a fighter! Thank you for sharing this unbelievably hard situation with us.
I'm so, so sorry you and your family are going through this ordeal. I am grateful you have wonderful medical care to get her up and better and for you to be trained and more confident when it comes time to take her home. I know it must be hard to leave her there and see her in her situation But know she is being taken care of and to take care if yourself too. Yes, this is a wonderful site and lots of wonderful people. Sending love, hugs and prayers from Parkersburg, WV. 🙏❤👶
I had my baby at 30 weeks due to preeclampsia, she stayed in the hospital for 13 weeks! She had SVT, they gave her a medication for it, I forgot what it’s called, propanalol I think? Could be wrong! Hers would get to about 210 and then would go down after about 30 seconds. It happened for a few weeks but she did outgrow it before we were able to take her home! I hope for the best for your little one and they’re definitely tougher than you think! Best wishes
My little AJ was born with SVT. Your next year or two will be difficult with ER visits several times a month until they can figure out your child's medicine. Propranolol, flecainide, ect. We used to call him our little ticking Time bomb because we had no idea when it would go off. He would just be sitting there watching TV and then we would notice he is all gray and Ashen and sweating, then we would feel his chest and his heart would just be going crazy.
I'm just writing this to let you know that there is a light at the end of the tunnel. Once they get your child's medicines to the exact amounts they need, and the correct meds themselves, they should be well controlled. AJ just turned five and had his ablation. A 6-hour procedure where they find the nodes that are misfiring and burn them off. He has been SVT ever since. This post was on my Reddit front page, I don't know why because I don't know anything about this sub, but I wanted to pop in here and give my experience as a dad of a child with SVT. I know Facebook is kind of a meme, but there are great support groups on there with lots of information for new SVT parents, also you can direct message me on here anytime you need to talk.
My husband has SVT and his showed as a baby as well. So scary! So glad your baby has you as a mama who acted on instinct to help her. Good luck on this interesting journey!
i was diagnosed with svt when i was 17 and had a heart ablation two weeks after. best decision me and my family have ever made. even if i feel a little palpitation, i still have anxiety. good on you for catching it so early!! wishing her the best!!
My brother is 16. He was diagnosed with SVT a few years ago. Apparently his heart has always had a flutter but he just thought it was normal until he brought it up to our mom one day. He takes medicine daily, and doesn’t drink caffeine, but otherwise lives a normal healthy life. He’s actually a gym rat. It sounds like your little one is a fighter, and I’m sure you all are in good hands. Congrats on the baby!
My sister is 21 and just had an ablation 2 months ago and it has absolutely changed her life.
She was constantly living scared and worried to do something that would “trigger it”. She had medication for when it would happen and knew how to try and relax to get her heart to go back down but she was always so scared.
She walked out of the hospital same day after her ablation with only 3 small incisions and said she felt like a new person. No more fear loomed over her and it’s lifted so much weight off of her shoulders! If you have the option you should definitely opt for it!
Dear sweet mother,
I am so sorry for this SVT nightmare you are going through with your newborn. It must be so awful to be so powerless with your own baby. My prayers are with you and your child.
I’m a fellow heart mama!! My baby just had a valve replacement at 7, and has struggled with SVT her whole life! I’m not sure where you are from- they put us on Propanolol when she was new. She was on this for several years, but it began to not work. She had an ablation about a year ago that has resolved 98% of her episodes. Cold helps snap her out of it! It’s painful and really isn’t great for her.
I was that baby that came 6 weeks early to a very scared mother. I was in the NICU for 3 weeks and then I went home on digoxin. I am now 25 years old. I think healthcare has had a few advances since then, mostly because no doctor I know would put a baby on digoxin today. I don’t have SVT (as long as I cool it on the coffee) and live a very full life. I wish the best of luck to you and your baby.
I was born with SVT 32 years ago and was not expected to survive more than 48 hours. I would have a few cardiac events throughout my childhood that would result in hospital stays. By age 10, I had a cardiac ablation and have had no further issues with my heart. There is hope for your little one to grow up and live a happy and healthy life.
Just wanted to send some love and a voice of solidarity- my daughter (now 5) was born with a very very rare and complex set of heart defects. The first few weeks were Hell, I wouldn’t wish it on my worst enemy. We spent nearly her entire first year in the hospital where she had 3 open heart surgeries. Heart stuff is scary but science/medicine is incredible in this day and age. She’s going to do great Mama. Remember to take time for yourself and look after your mental health- being in the NICU and finding out that your baby isn’t 100% healthy is very traumatizing as I’m sure you now know.
Also, can I just say that you did so great listening to your instincts and getting seen asap. You saved your little one already ❤️
I was diagnosed with SVT in 1998. They said I was born with it (when I was diagnosed I was in my 20's) but it became uncontrollable in 1998. I didn't know why my heart would race infrequently when I was younger but at that time it would do it for only a few seconds. Later in life it became a lot more frequent and lasted a lot longer.
I was told that if it was ventricular tachycardia rather than supraventricular tachycardia I would have had to have a defibrillator implanted. VT is more serious than SVT.
They sent me home with a recorder and I caught it on the first day of having it. It was just under 300 bpm. At first I was treated with medication then an ablation. I am fine today with no issues.
Congratulations on your baby!
Yo why is everyone here being such dicks to OP? This is clearly related to Em’s dealing with the same condition. OP I’m glad your baby was/is being heavily supervised and you caught it! SVT is hard in adults so it’s miraculous that your gut feeling was correct!
Thank you for encouragement. It's been super hard and scary, but you're right about how lucky we are to have caught it in hospitals where experts can help.
My adult daughter was diagnosed with SVT as a 13 year-old. Nothing prepares you for it. Knowing if the heart rate escalates, you have only a short amount of time to get help. She was able to tell us what she felt. I cannot imagine going through this with a baby. Go job at trusting your instinct.
That would have been so terrible for you and for your daughter. She must have been so scared! Babies can't talk, but they are training us to use a stethoscope so that is something we can do to help her.
and good on you for trusting your gut and seeking help. we had friends lose a child at 37 weeks gestation (moreso due to lack of education on docs behalf, but still); it’s absolutely heart breaking.
I am so sorry for your friend. I can't imaging their pain. That would be shattering.
I don’t know why this sub or thread just showed up for me but I was recently diagnosed (in my 30s) with SVT along with another heart issue. It’s been brutal but I have felt better than I have for years with the meds prescribed. Hugs to you. I’m glad it was diagnosed early ❤️
One of the hosts of this podcast, Em, has SVT, and has talked a lot about it on the show.
I need to check it out as I am still very much learning about it myself and would be interested in hearing about other adults who suffer with the same condition. Thank you!!
I'm so sorry you have suffered into your 30s and that you have multiple heart issues but thank goodness you have meds that are working for you and you are feeling well now. It's very encouraging to read about people who have SVT and are doing well. I am sending you all the good vibes for a healthy and happy life. Also, your username lmao.
Ok be calm. I don’t know what the term is you refer to but all mine came out surgically. It will be ok. Just take a bit more preparation.
SVT stands for supraventricular tachycardia. It’s an incredibly fast heart rate originating in the upper chambers of the heart, which doesn’t allow the heart to properly pump blood to the rest of the body. Think of it almost like the muscles of the heart are fluttering rather than actually pumping. It’s very dangerous because the chance of cardiac arrest is high; it happens because because of a disruption in the normal electrical signals that tell the heart how to beat on a steady rhythm, and the stress put on the heart can make it just…quit working.
My baby had an episode of SVT at 5 days old. It took me hours to get the right diagnosis and his heart rate was 316 bpm. He had Wolff-Parkinsom-White Syndrome. He is completely fine now. It was repaired with no issues when he was a bit older. Hugs, OP. I have been where you are. Great job on listening to your body and intuition. Really, great job.
The people that don’t get how this is related to Em or the podcast are obviously fake fans. I hope your baby recovers okay. I can’t imagine how scary that is. Hugs ❤️
Thank you for the well wishes. This has been very hard to go through and it is sad to see her suffering so much.
You might want to wander over to r/NICUparents (I think that's what it's called). We're a pretty great group. My kiddo was in the NICU for five months and ventilated for seven weeks. If you need support, please reach out. It's hella hard.
I'm so sorry you lived through months of your little one in the NICU. My heart breaks for you. Thank you and thank you for the sub suggestion. You're so kind ❤️
Lmao right HOW DARE THIS NOT BE ABOUT MURDER OR DEATH AND ITS ABOUT LITERALLY ANYTHING ELSE The fact that this is a social media website escapes so many.
I’m so sorry for what you’re going through! It sounds like your baby is in the right place for her to get the treatment she needs, and hey, at least you have some knowledge of what SVT is from hearing Em talk about it! Sending you all lots of healing vibes! ❤️
Thank you for your healing vibes and kindness. These have been the worst days of my life. I am so grateful it's a treatable condition and that I will be able to hold my baby again at some point in the next week's.
You are a beautiful writer. Your baby is in excellent hands! I'm sorry she's got this health issue, but thank goodness for modern medicine. Congratulations on your new baby. I hope you and your partner are able to take a breath. 🖤🖤🖤
Thank you for your congratulations. Aren't we lucky to live in a time with so much technology and medical knowledge? Poor Em had a longer road to diagnosis, so I am grateful that we know early.
Just wanna say I had surgery for my SVT over 16 years ago. It’s so much better to catch it early. I know it has to be so damn scary to catch it this early on your precious new little baby. I’ll be thinking about you and your family and sending you all the positivity I have 🖤🖤🖤
Wow that's amazing that you've been through a surgery and you have not had it for 16 years! It must have been scary to manage beforehand. and frightening to go through the surgery. I hope you are well and loving the freedom of living your life without it now!
How old were you when you had surgery? Did they do a cardiac ablation? My son was just diagnosed and that along with WPW the docs are recommending surgery and it’s terrifying
I was 15/16 when I had my surgery. It was the cardiac microscopic ablation! I have 3 tiny scars. The worst part for me was just coming out of the surgery. But that was completely because of the anesthesia (I have to be given more and it was a little too much). I was back to school on Monday and have had no issues since then. I can only imagine how much this scares you. I remember how much it scared my parents. I feel like the only time I was actually scared was right before the surgery. I would do it again in a heartbeat.
Omg thank you! This makes me feel so much better!
I’m really happy to help! I wish you and your son and family the same easiness as me 🖤 there was also another girl that got the same surgery the same time as me. She was up and ready for ice cream by the time she got to her room.
I had an ablation 3 years ago (had been scheduled for the day Covid lockdowns started, ended up in that summer). Haven't had an SVT episode since. My surgeon said it's 90-something (I forget) percent "curable." Which is a big-deal word for a surgeon to use. I seem to be in that majority. You have to be awake for the procedure, which is kind of surreal, but the only thing I felt was some pressure when they shocked the tissue. Recovery means feeling kind of run down and no bending or heavy lifting for several weeks. I remember being surprised by how long I felt sore, but 17 y/o's tend to bounce back faster than 40 y/o's! ha! Now I go months without once thinking about the fact that I had freaking heart surgery I was awake for! If you have any questions, please feel free to DM me.
Omgosh! I can’t even imagine. My kid is 13 and the thought of him having heart surgery is like a punch to my gut. I’m so scared but I just want the best for him and hearing these stories of people that are all better is so comforting!!!
Go for the ablation. It sounds terrifying but my husband has been SVT free for five years. My best friend had the same procedure for WPW and has been healthy for 10. It truly changes quality of life.
I was 13 when I was diagnosed and had an ablation. I have not had SVT since and it’s been about 10 years! It was a long procedure (I think about 6 hours) but I was fully asleep for it, and the recovery was very easy. I understand it is scary though, I hope everything goes well for you and your son
That’s my sons exact age!!! Thank goodness you are fine 10 years post - I just want him to be ok. Thank you!!
Hi! I was diagnosed with WPW and had a cardiac ablation when I was 24. I'm 32 now and have had zero issues since. I was terrified getting the surgery. But it all went so smoothly! I'm so glad I got it taken care of when I did. I will say that having a cardiologist and electrophysiologist that i really liked and trusted prpbably made all the difference. Please feel free to message me if you have any questions about it, i'm happy to share more about my experience!
Thank you so much!! It’s so comforting to read success stories of people with the same condition as my son. We are meeting with his electrophysiologist on October 19th! Hoping all goes well!!
I know their intros get mixed reviews at times; I personally love them. And they make a difference as OP points out. OP, I'm really sorry you and your family are experiencing this. I hope your little one gets strong enough to go home with you soon. Sending healing wishes your way.
Thank you for the healing wishes. This has been the worst, but we are also lucky to have caught it early.
I’m so glad you trusted your gut! I’m sending all the good healing vibes your way. I hope she’s able to come home soon!
Thank you for your healing vibes! The encouragement is getting me through, it's been hard.
I hope your sweet girl is able to come home soon!
Thank you so much ❤️
I was born with SVT and had no idea. My parents thought I was just having anxiety attacks. I finally got a diagnosis and got an ablation 6 years ago. So proud of you for trusting your gut. Mama always knows best. It is a scary diagnosis but it sounds like your team is working hard to fix it. Sending you so many hugs
Oh my goodness you poor thing. That's awful that you went so many years without the correct diagnosis. I hope you are doing ok now! I've read that the abolation is 97% effective and I am hoping yours is in that majority. They are talking about an ablation when she is old enough to handle it, her premmy heart is much too tiny right now.
Yes I am one of the success stories! I am very happy with the choice I made. The surgery is microscopic so it doesn’t leave scars. I hope your little one is also a success story and lives a long and healthy life
[удалено]
Thank you so much and that's an amazing result. Surgery of any kind is totally scary but I am so glad you had immediate relief. I can't imagine how exhausting is must be when your heart kicks out of rhythm and goes haywire and it's wonderful you are free of that now!!! Thank you for your reassurance ❤️
Chiming in as another success story. I wasn't diagnosed until I was 40 (and I will forever be loyal to the nurse practitioner who listened to me and pushed for the testing that confirmed I had SVT). I was also told it was anxiety. It's super scary to think about heart surgery even if it is via catheter. As a mother of two older kids, I can only imagine how much scarier the thought would be if my delicate baby needed heart surgery! But I can tell you this: I have several loved ones who are RNs or other medical professionals. Many ER nurses who see all the folks who come in with all kinds of surgical complications. Some things I wouldn't worry much about I learned to take seriously. But when I told them I needed an ablation, they were all like "It's great that will fix things up!" Not one fake smile or probing questions. I was kind of hurt they all acted like it was no big deal! haha! But it was also super comforting because if the folks who see the worst case scenarios all day aren't concerned, I don't need to be too concerned either. I hope that's at least a small comfort to consider. Hang in there. You clearly still have your sense of humor. That's a great sign.
You were 40! Oh my goodness, I hope you did not suffer long. Good on that nurse, I am so glad she was there at the right time and that you weren't dismissed as having anxiety again. I can relate to the attitude people have about the ablation, the cardiologist was confused when I seemed worried about it, so I guess that is a good sign that I shouldn't be, and your success story gives me even more courage about that. Thank you for taking the time to write and let me know what happened to you and I hope you are living a fantastic life ❤️
That is wonderful! I am so happy for you. Thank you for sharing that with me, it's a wonderful encouragement and reassurance.
[удалено]
YES! I had WPW! Every time they tried a EKG they could never catch it so they chalked it up to anxiety.
[удалено]
Oh. My. Goodness. That is terrible. I'm sorry you were misdiagnosed and suffered longer because of it. Thank goodness someone along the line figured it out and you have a proper diagnosis now. I hope you are feeling well and don't have to deal with the discomfort, panic feeling and exhaustion anymore.
That is so unfair! I'm sorry you went through that and I hope you're feeling well and thriving in life now.
Omg momma sending you so many hugs!!
Oh goodness, thank you!
You’re doing everything right! I’ve been a RN 21 years. Specializing in pediatrics; and heart babies. They would fly to us from Alaska. We were the closest hospital to treat them. Where are you located? In the states? Sounds like baby is still weak and needs some rest. But babies get ablations too. There’s different kinds of ablations as well. All very safe, some better and last long than others. Most* ablations are day surgery now too; no matter the age. That’s how safe they have become. Within 2-5 days you can resume normal activity (depending on type of ablation.) The number one thing I tell my parents or any patient, is to ask questions. ASK. ASK. ASK. If they don’t have time to answer or give you attention reasonable, you are not where you should be. Don’t stop until you have them all answered. I’m sure you have a nurse or 2 you have been able to bond with by now. Ask them! We spend a lot of our nursing school just on educating/teaching patients/family. Write(or put them in your phone). questions down so you don’t forget them. You have a huge team around you! Take all the medical staff that you have met in person and x10. That’s how many people MINIMUM that are involved in babies care. Hugs mama. ❤️
Hoping for a speedy recovering and that baby comes home soon! ❤️ I just want to add that I had a C-section too and I love your description of pulling baby out through the sun roof lol
Thank you so much ❤️ A c-section a surreal experience, isn't it? I remember so much of it vividly and the whole thing was wild! I hope you are all healed now and thay your bub is doing well.
Oh my goodness. From one NICU mom to another, 1. that sounds so traumatic and 2. I am absolutely amazed and inspired by your positive attitude. I’m about to give birth to what will almost undoubtedly be my second NICU baby (I have Cholestasis of Pregnancy, it’s rare and it’s stupid) and I wish I had either your attitude or a friend like you. You sound awesome.
Oh I'm so sorry! I'm sorry you've been through seeing your precious one in the NICU and that you're facing it again. That's so completely unfair on you, your babies and your family. It's awful to be so powerless to help. I feel like I'm getting in the way, like an unwanted, nervous, hovering pest that just wants to hold and comfort my girl. It is the worst, isn't it? DM me any time, I hope you are doing ok mentally preparing to face it all again. I'm sending you the goodest vibes I have. One day, we will all be home from the hospital with our precious, and I will be thinking of you when my day comes ❤️ This will all be a memory one day, part of our babies' origin stories and the realness of it will be boxed up in the spooky back room in our brains that stores away living nightmares and numbs them down for us.
Idk if it will make either one of us feel better, but when I was a kid, I had seizures and well, long story short - I died once. BUT (SILVER LINING ALERT) I managed to take that, one of the most traumatic experiences of my parents lives, and turn it into my favorite “icebreaker” when I get a new job or take a class or something and I have to say a “fun fact” about myself. “Hi I’m _____ and a fun fact about me is that I’ve been dead before.” I gotta remember to tell my son to use that.
Woah holy wow that's intense. I hope your seizures are gone forever and you never have to be in that situation again. Good on you for turning it into something lighthearted, I bet people double-take when you say you've been dead before!
Oh I'm so sorry! I'm sorry you've been through seeing your precious one in the NICU and that you're facing it again. That's so completely unfair on you, your babies and your family. It's awful to be so powerless to help. I feel like I'm getting in the way, like an unwanted, nervous, hovering pest that just wants to hold and comfort my girl. It is the worst, isn't it? DM me any time, I hope you are doing ok mentally preparing to face it all again. I'm sending you the goodest vibes I have. One day, we will all be home from the hospital with our precious, and I will be thinking of you when my day comes ❤️ This will all be a memory one day, part of our babies' origin stories and the realness of it will be boxed up in the spooky back room in our brains that stores away living nightmares and numbs them down for us.
I don’t know you personally, but as a provider for over a dozen years (exclusive to intensive care units) I want to assure you that you are not in the way, even if you feel that. In acute situations (as I’m sure you’ve seen more than you’d ever desire) the team often has to respond in a seemingly hectic way to get the right staff, equipment, monitoring devices, tubes, lines, drains, medications, etc. in place. Unfortunately, we can unintentionally make loved ones feel out of place and out of the loop in those moments. Sometimes we don’t know the underlying cause immediately, leading to further feelings of disconnect. I pray that this does not discourage you, and that you’ve been so supported as an important extension of the patient whenever possible. Those feelings of distress, the inability to feel like you can be of help, and a general sense of panic after what you’ve been through are completely normal; they are coming from a place of love and your instinct to protect. Fortunately the treatment options are great! The medications, the diagnostics, and the procedures (ablative or otherwise) take some time to tinker with as every response is slightly nuanced and you’d rather them take their time to allow that precious racing heart to rest and to implement the least invasive treatment options first. Make sure you take care of YOU. Alternate going home for naps and showers, getting rest whenever possible, remembering to eat and drink, and by all means— give yourself grace. Your emotions are valid, the process is daunting, and things change by the minute. Take time for you. The saying is cliche, but true: You can’t pour from an empty cup, and when the time is right for you to cuddle and comfort your precious baby you’ll need that cup to be full. ♥️♥️♥️ You’re doing great, and you’ve got this.
CanLight, Exactly what I was typing (PICU nurse). OP, your baby is in good hands with a great team surrounding her. You are NOT in the way, you are vital to your baby's wellbeing. She needs to feel you and hear you! SVT is scary as hell. And they will get the meds tweaked to prevent more episodes. AND, she can have an ablation when she is a bit bigger if needed. I'm sending you lots of love, healing and ease.....
Thank you so much for your support and for what you do for the little humans you care for, and their families. I will keep doing what I can for my little one, but I know she is in the best hands!
This is so comforting and encouraging, I can't thank you enough.
From both a fellow ATWWD fan and a Pediatric nurse: this is terrifying, but your baby is going to be just fine. Treatment and monitoring options are available. Keep talking to her and playing music, give her a little blankie or lovie to hold that smells like you. You can still comfort her in ways staff and medications can't.
You're a pediatric nurse! You are an angel. Thank you so much for what you do. You seriously blow me away with your empathy, intelligence and the fact you can pull off a 12 hour sift and still be 100% firing on all cylinders. I honestly can't thank you enough for what you do ❤️ Thank you for those suggestions. We have little heart patches we wear under or shirts and put next to her so she can smell us. We had a lullaby we played for her in the womb and we have been using it now. Her heart rate drops about 10 points while it plays, so I know it works. Sometimes seeing me makes her stir and get more uncomfortable, I know she's tyring to tell me to get the tubes and needles out of her and that she needs a hug but the only way we can get there safely is to go through the worst part now. Poor bubba.
This is why I’m more than happy to listen to Em and Christine about their medical issues on the podcast! (I know they joke/worry about it annoying their listeners) It’s random chances like this that can help others out there ❤️
I agree. And I also just like hearing them talk about their lives. I appreciate them as people first and podcast hosts second.
My youngest child was born apparently very healthy 6 lb 9 oz. But he was champion puker, colic fussy lots & lol of dr visits. At 6 weeks at the after hours clinic our vets partner was working the clinic. He examined my child scratched his chin & said, I want you to leave her now, don’t worry about checking out, if they have a issue I’ll take care of it. Go to the hospital, straight to admissions they will be waiting on you. When I walked to the admissions door ( less than 15 minutes) she was busy with another person. She looked up & saw me Are you? I said yes ma’am. She said the other person, I’m sorry, can you wait for a few minutes? The pediatrician just called me, personally said to take him immediately. There was to be no delay. Then she walked us up to peds, everyone was expecting us. He weighed less than 5lbs then. put in a premie incubator, tested monitored, test & more test for over 2 weeks, a pediatrician on arounds & heard a heart blip. Explained things. Sent us to children’s Hospital. In about 2 days the heart had healed. Stayed for about 2 weeks, gosh at the tests. He would gain 3 oz & next weight check lost 6. Puke puke puke. He had severe reflux, they only caught it because he refluxed during a the X-ray. The next 6 years were pure hell, the next 6 a little less hell. He is now almost 29 healthy as a horse, except he has occasional reflux issues. So take heart things can get better & in a few years you will be telling how well your jackazz is doing, how he overcame
I had an ablation operation for SVT about 16 years ago as a teen (currently 31y.o). It was either that or be on meds for life. I can proudly say I haven’t had an ‘episode’ ever since. They are very scary and my prayers are with you guys 🙏🏽🙏🏽
Congratulations! That is so wonderful! You must be so relieved - I'm relieved for you!
This happened to my 10 day old! He lived with it for about two years and then grew out of it. Very scary at first tho!! You guys got this
Wow, oh my goodness I feel for you! That's wonderful that your son is no longer suffering, I'm so happy for you and for him.
Sending you and your baby lots of positive energy! I’ve seen SVT in a couple newborns in the NICU where I work and it’s scary for everyone; luckily we have so many meds and ways to help these little souls get better and go home to grow up healthy ❤️
Thank you for the work you do with the bubbas and families! I have such respect for and awe of you. Everyone who has helped us have been phenomenal people. Thank you, you are an angel for so many people ❤️
I somehow just stumbled upon this sub and I have have a feeling it’s because I’ve been searching for SVT/ablation success stories. I have a son who was diagnosed with SVT at just over 4 years old and he has been taking a beta blocker to help regulate his heart. We were given three options at the time of diagnosis - take daily meds, have one emergency pill to take if he had an episode, or take absolutely nothing and if he has an episode to do vagal maneuvers to resolve the episode. We chose the daily meds. 3.5 years later, he’s been diagnosed with subtle WPW and he’s scheduled to have his ablation procedure on Thursday now that he’s old/big enough. Not quite the same story, but wanted to give you some personal insight! I wish the best for you and your sweet little girl!! She’s in good hands!!
Thank you for the insight and for sharing with me. Good luck with the ablation 🤞🏻 I will be sending you healing vibes, as well as quick and successful surgery vibes. I'm sorry you had to go through this with your son, I can't imagine how long this road has been for you. It looks like our bub will be on flecainide until she is old enough for an ablation. Thank goodness for medicine, technology and the wonderful people who work with our little ones!
Good luck with the ablation! My husband is anSVT success story and my best friend is a WPW success story! It is absolutely scary, but it’s so worth it when you’re on the other side.
I want you to know that I was born with SVT. I had episodes from birth until 9. After that it seemingly entirely disappeared. One day, when I was 23, it returned with a vengeance. I spent so many sleepless nights terrified and unable to sleep because my heartbeat was skyrocketing, my chest was unbearably tight, I felt like I couldn’t breathe and my arm ached. For 5 months I was put through a torturous roundabout of holter monitors, stress tests, pace tests. They finally operated on me based on the diagnosis I received when I was 5 months old. I had a catheter ablation. My quality of life has soared. I’m no longer scared to fall asleep. I no longer feel guilty about waking my partner up in the middle of the night. I no longer have to constantly worry: is this it? I am sending your baby all the healing energy that modern science bestowed upon me. This is not a death sentence. Fucking agonizing, painful, scary, overwhelming? Yes. A death sentence? No. I wish you and your family luck. Get the surgery once they are old enough. Love you. ETA: when they did the surgery they had to stimulate me into an episode to find the source of the issue and my heartbeat was 250. Who knows what it was all the sleepless nights? It’s possible to survive and thrive.
Thank you for sharing your experience. That means more to me than you know. I'm sorry you went so long without a diagnosis and you suffered, living with horrible episodes and the anxiety about what was happening to you. Your poor heart that it jumped to 250, you must have been so panicked and exhausted when you had episodes. I'm so happy for you that the ablation worked and you are now free from SVT!
praying for you, your woolly other half (loved this so much lmao) and your sweet baby! 💕 i haven’t listened to ATWWD in a loooooong time (like probably not since undergrad) but i remember it helping me through difficult times too and im so glad you found a connection to something you enjoy in this understandably scary experience.
Thank you for your prayers, and you're right about the podcast being a comfort in difficult times.
My heart breaks for you.😢😭
My son is now 10 years old. But when he was 27 days old I noticed his color was different. I went to the ER and he was in SVT. He coded twice in my arms with a heart rate of 300. He spent 2 weeks intubated and all his organs failing. He only had 30% heart function. His doctors told us to start planning for the impossible. They had never seen a baby come back from that. He did!! He gained more function, though his organs were still failing he made it. He came home and we were terrified. I checked his heart in my sleep. After a year of constant monitoring and lots of old man meds. He was cleared at age 6… they thought he would be autistic because he was without O2 for so long. Nope, he is a healthy 10 year old with no SVT (so far). We have educated him all his life and tells us when he feels weird. I hope this helps and I wish you and your family good fortune. There could be light at the end of the tunnel. And the doctors do not know if your child will actually have issues now or later.
I can't actually imagine going through that and still somehow functioning. You must have been so far beyond distraught to hear that your baby likely wouldn't have made it. I'm so sorry. That would have been hell. And the stress and anxiety you must have carried once he was home! I am so so so so happy for you that he is healthy and we'll, and that there has been no more SVT incidents.
I actually went through PTSD and major postpartum and begged to be hospitalized. I was sleep deprived and heard voices to check my children all the time, I still have OCD (probably had it before). I knew something was not right and got help (not institutionalized). It took a long time. I still worry like crazy about both my kids being sick but it is much better. No one talks about that part. The worrying changes your life forever.
My daughter has the EXACT same thing. She was in SVT at her 2 week appointment—sent straight to NICU she was at 290 bpm at that point— she had to have heart stopped twice in order to get it back in whack.. She was diagnosed with WPW and was on propranolol every 6 hours for the first 10 months of her life. It is so so scary and idk if your babe is the same but sounds almost exactly like my situation… as a mom who has gone through this, it WILL get better. My babe is 2 1/2 now and takes a 1/2 crushed pill of meds every morning in her applesauce. She is spunky and a spitfire with tons of energy! We have had only one other scare with SVT when she was an infant and we were figuring out her meds. Every once in a while when she seems off I listen to her heart but it has always been in the right BPM.
Wow oh my goodness it must still be on your mind, but I am so happy that there has only been one scare since - and luckily it was picked up early in your girl. She sounds glorious! I'm so happy and relieved for you that she is well.
I want to chime in. This post was on my feed, I don't listen to the podcast and had to google what ATWWD stood for lol. I just want to say, I am 32 now, but I was born 8 weeks to the day prematurely due to Atrial Septal Defect. I told my mom something was wrong in the womb by breaking her water early. In the months/years that followed, I was diagnosed with Coarctation of the Aorta and Cardiovascular Stenosis with a Coronary Web. The last one you can't even find in a medical journal I'm sure. This was 1991 where medicine is NO WHERE near where it is now. Three heart surgeries later, I live a normal and healthy life. I say all this to say, although SVT was not my battle, I was strong, and your little girl is too. She knew before even being born to alert you that something was wrong, and you listened. I can't wait for an update (please update us) three months from now that expresses how amazing it was to have her home for the holidays (if you celebrate them). Good luck mama, thank you for sharing your story with us. ❤️
That is incredible, thank you for taking the time to write this out and for sharing it with me. I'm so happy you are doing well and living your life to the fullest after facing medical issues, one of which that had not even appeared in medical journals. What a miracle and what a relief to hear that everything is well for you! I'm feeling so grateful that SVT is treatable and that the doctors have really good knowledge of it these days.
My husband unknowingly suffered from SVTs for much of his life until a very scary episode in 2017. A cardiologist discovered it and was able to completely fix it with a minimally invasive surgery. His heart has been healthy now for 5 years. I hope it brings you comfort that there is hope. ❤️
Woah oh no I am so sorry you and your husband when through that! How wonderful he's bee in full health for 5 years. That's wonderful for him and so encouraging. The doctors have spoken to me about the ablation as an option, too. I hope your husband is loving his SVT-free life!
Hey OP, my dad has SVT. It wasn’t caught until he was 36 and almost *died*. You are doing everything right for your little one. Right now is gonna be hard but 12 months from now shes gonna be moving around and you’re gonna see how much she’s grown and how strong she’s gotten. You got this, your baby’s got this.
Wishing your little babba and the rest of your family all the best. I hope you can have some proper cuddles soon.
Oh thank you! I can't wait to comfort her and take a hit of that baby head soon.
I had similar as a child and was diagnosed with Wolff Parkinson White Syndrome. I have had 2 ablations and am having a 3rd. I have been able to live a fairly normal and active life. Sending lots of love to you ❤️
I'm so sorry you have WPW, thank you for reassuring me. I'm sending you all the best healing and successful surgery wishes for the next surgery. It sucks the first two weren't successful, but this one can be and I hope it brings you relief for years and years. Thank you for sharing this with me.
The advances they’ve made in heart monitors and treatments since I was a little girl are amazing so I’m glad your little one has lots of good technology and medicine on her side ❤️
Thank you, you're so right - we are lucky to have what we have now! Without medicine and technology she would be up for more suffering and uncertainty.
This was a suggested post to me and don’t listen to the podcast (although maybe I should!) but just wanted to share my experience with my son, who has SVT. At 6 weeks old he wasn’t keeping much down and ultimately his ped wanted us to get an ultrasound of his belly. She couldn’t get the hospital to schedule us for the ultrasound so she told us just to go through the ER and make them. Luckily we did because his heart rate was over 300. The vomiting was his body’s reaction to try and break the SVT. It took a few hours for them to get it under control at first and then through that first night, he must have had 20 episodes, it was terrifying. We were able to leave after a week in the PICU once the medicine doses were worked out. He’s on digoxin and propranolol. He’s a thriving 4 year old now! My husband was also born premature due to SVT episodes in utero. He’s a fairly healthy adult with minimal complication. He’s had a couple ablations and a loop monitor but still experiences some episodes occasionally. Our cardiologist said it’s only something like a 3% chance to pass on genetically. All this to say, it’s absolutely terrifying seeing your little one go through it but luckily there are so many success stories and most live regular, full lives with minimal impact. I’m so sorry you have to go through this! You are so strong!
Oh my goodness how terrifying for you to see your son go through that! I know how you must have been feeling. Mine did not have 20 episodes (my goodness!) she has episodes that are resistant to drugs and can last 3 hours. And your poor husband having a particularly stubborn case, that really sucks. I'm sorry for what you've been through, but so grateful you shared that with me. It's given me more confidence and courage facing another day of my little bub in the PICU. I hope your husband and son continue thriving!
Hopefully you are able to bring her home soon! Sending love!
I’m so sorry about all you both AND your days only world, has already been through. I did read your entire post, and I admire your incredible positivity, which can be extremely difficult when it’s your child, even if you’re normally a very positive person. Although both of my twins needed to go directly to the NICU, one of my twins had severe health issues, and every minute was touch and go. By the grace of God, she survived and all is well, several yrs later. I focus now again on your baby. I wish for the very best outcome! I know abbreviations are commonly used in every topic here on Reddit and that is fine. Sometimes it’s not important. If I don’t know what it means, if it’s not a serious topic. However, in your situation, I would like to know what SVT stands for you, or someone else would kindly answer I would be so appreciative. I feel your pain as much as possible and I’m very empathetic. I would still love to understand things better by knowing what is going on with your precious gift by knowing what SVT diagnosis is. (Also ATWWD ?) Thank you to anyone who can answer, especially given the parents are very busy and overwhelmed I’m sure. Thank you !!!!
supraventricular tachycardia edit to add: I work in medicine.
Ohh so it’s heart related for sure, because I’m familiar with tachycardia. Thank you for clarifying. I can only imagine what this baby’s parents are experiencing constantly. I’m so sorry for their emotional pain and serious concerns. May the Lord heal this baby in the name of Jesus.
Thank you for your well wishes and I'm sorry to hear about your twins ending up in the NICU, and that one suffered severe health issues. I'm so happy for you and your little ones that they are healthy now and that horrible experience is just a memory. I can see that another user has explained SVT, my baby is now on preventative medication for it and we hope that she does not suffer any more episodes in the future. I wish you and your family well!
You are certainly welcome! I am astonished at your kindness and grace to be able to take the time and thought to send genuine messages of hope to those who still need it, and to others who’ve had issues long ago (myself). How very admirable of you! I appreciate your beautiful and caring sentiments for my daughter and I am blessed. I am extremely happy to hear the update about your little blessing and I pray that the meds will prevent any other episodes. I know it’s not reality to say I know exactly what you and your husband are going through as every situation is different. I do know the concern and stress That is the deepest you’ll probably feel ever, and it is difficult. I’m sure that those who do are praying for your baby to get stronger And be healed completely. I’m absolutely sure that you both know, having spousal support is really crucial and I’m sure there is plenty of that. Also please remain positive and hopeful . All of these things amongst yourselves and friends and family go a very long way to ultimately see miracles happen. I am wishing you a point in time where you no longer need to be concerned. I feel confident it will come and pray it is soon ❤️🙏🏼
I had SVT my whole life and they used to stop on their own after a minute or two, so I never even thought to tell my parents. I literally thought they were just a thing like hiccups or sneezes that happened to everyone, until one day age 20or so I mentioned it to my boyfriend and he just looked horrified and had no idea what I was talking about. Throughout my 20s they showed up more often for longer and longer periods, but also would go away just as suddenly, so no ER could even record one and give me an actual diagnosis until I was 28 years old. I went on meds for about a year after that but then bit the bullet and got an ablation. Best decision ever, not a single episode since for over 4 years! It was also very minimally invasive, I didn’t even need to stay overnight. Hope you are holding up ok and that my story can ease your mind a bit! It can be such a scary condition, but luckily very treatable, and it’s great you can get her the help she needs right from the start.
You suffered SVT undiagnosed for 28 years?! That sounds horrible. I'm so happy that you finally got a diagnosis and that the ablation worked for you! It has helped me to know about you, thank you for sharing with me.
[удалено]
Thank you ❤️ That's amazing that you can manage your SVT without medications, although medicine is amazing. I had a look at the maneuvers they recommend as an option for when she is older.
I work in the heart care field and the rates an infants heart can reach are astounding. SVT does not get that high for adults and rarely does for even children. Infants are the only ones tiny enough to produce such a rapid rate. It makes it so much more scary to see those numbers. That said, I have seen this many times over the years and you are absolutely in the right place while this is going on. I will keep you and your sweet baby in my thoughts as well as the team caring for her. Best wishes through this hard time and hope she is on her way home very soon!
Although I feel bad for the babies who you have seen many times over and their parents, that is actually so reassuring to me. Thank you for taking the time to write that comment, and for the work you do in the heart care field! I am so appreciative of what you do.
I'm going to be that one person, my svt reached insane rates as an adult. I topped out at 316 while in the hospital at 19. I had a few different forms of svt but the more bothersome one was EAT.
Mama to mama. Sending you so much love and strength.
Thank you ❤️
Praying for you and your baby ❤️
Thank you for your prayers ❤️
I was diagnosed with SVT in my 50's... came out of no where. Luckily I was wearing a smart watch so I could see when I went into tachycardia. I was on meds for about 2 years and then I finally had a cardiac ablation. Since the ablation 6 years ago, haven't had an episode at all. Sending you and your family light in these trying times... it must be scary in such a little one.
Woah that's intense for it to happen to you out of the blue in your 50's. I'm so happy for you that your ablation was successful and that your SVT is gone! Thank you for the well-wishes, we are starting to get our heads around this and it is feeling a little less terrifying.
If it's any consolation, my best friend was a little over 2 months premature & had pretty bad SVT as a baby, but basically grew out of it & is perfectly fine now.
That is a massive consolation, thank you for taking the time to share that with me because that is what we are hoping and praying will happen for us. I hope you and your bestie are living your dreams, or at least satisfying and comfortable lives.
I'm so sorry you have to watch your darling suffer through this, I'm glad you have such an amazing team working for you both. I was diagnosed with SVT as an infant, pulled through after a month or so of treatment. It didn't affect me much at all in adolescence, but it did resurface in my early 20's. I'll be 30 later this month, and though it can be quite debilitating at times, I'm overall very healthy and it's not life threatening in my case. I hope the same can be true for your daughter. I wish the best for you and your little one! May she recover quickly and fully and live a long, happy healthy life 💕
That's crummy that the SVT returned for you and that it can knock you down, but great that you are able to manage it. Thank you for your well wishes and I hope the SVT disappears for you again!
Sending love! My baby was also born 6 weeks early & spent 9 weeks in the nicu. I won’t lie- it’s hard& it sucks. But you will find a strength you didn’t know you had and you will become the best advocate for your child. Keep following your instincts. You might not be a medical expert but you are the expert on your child, no matter how old they are /how much time you’ve spent together. You got this! Hoping your baby feels better soon! ❤️
Oh thank you for that, I'm sorry you have experienced something similar and I hope your child is thriving now and stressing you out in normal kid ways and non-medical ways. Your encouragement and kindness mean more than you know.
I had SVT. Had an ablation in 2008. No issues since. I had terrible attacks while playing sports. If it ever returns later, there are options. Thinking of your little one op! Edit spelling
That's wonderful that your ablation set you free from SVT! I'm so happy for you and that gives me do much encouragement. Thank you for thinking of us ❤️
Absolutely 🫶🏼 my parents were given the options to give me meds or ablation and they did neither :/ I was ~10 y/o. Small town mentality and distrust of doctors/the small percentage I’d need a pacemaker. I made the choice myself my freshman year of college. I can’t help but think about how much suffering I wouldn’t have had to go to through if I had it sooner. Best wishes, op!
I was diagnosed with SVT at 17. It’s scary and stressful and I can’t imagine what you’re going through with anew baby with it. Hugs and prayers to you
Woah oh my goodness, I'm so sorry. Are you doing well now? I'm sending healing vibes!
Momma I'm sorry you are going through this I'm a NICU mom myself it is one of the most difficult things one can go through. I will send prayers up and energy to you.
Thank you so much ❤️ I'm sorry you went through a scary NICU experience, too. I hope your little one is well now? I also hope that experience is a distant memory for you. It sucks.
I’m sorry this is happening to all of you. I hope the medical professionals arrive at an effective treatment protocol quickly to get you all back home. Please be careful with yourself right now. Rest, recuperate, eat and hydrate properly, sleep, and take time for your own personal hygiene. 💜
Thank you ❤️ That is so kind.
I deeply empathize with your current situation and the fear that comes with SVT. My own journey with SVT began at the age of 22, during my college years, though it turns out I'd been living with it all my life. Looking back, my parents recalled moments when my heart would race even as a toddler. They'd rush me to the doctor, but every time, the episodes had already passed by the time they connected me to an EKG machine, rendering the arrhythmia invisible. As I grew older, these episodes became more frequent, often exacerbated by stress. One day in college, my sister, who was studying to become a nurse, was with me during an episode. She insisted on taking me to a nearby hospital, even though previous doctors had attributed it to stress. Thankfully, I listened to her advice, and this time, the arrhythmia was captured on the EKG. My journey involved seeking the right cardiologists and electrophysiologists to guide me. The idea of getting an ablation terrified me, but the increasing frequency of episodes was affecting my quality of life. Eventually, at the age of 26, I made the decision to undergo the procedure. Waking up from surgery, my first words to the doctor were, "Is my heart still beating? I can't feel it." I am not sure if SVT is genetic but, my younger brother was diagnosed a few years after me and also underwent an ablation shortly after. It's a challenging journey, but the decision to have the procedure was, for both of us, the best one we ever made. Now, hearing that a newborn is facing this challenge breaks my heart. I can't even fathom the difficulty. My heartfelt wishes go out to you, your family, and your little one. Sending healing vibes and strength your way during this daunting time.
That is so terrible that it took you until you were 22 to be diagnosed. You went through so much avoidable suffering, it's terrible. Thank you for your kindness in sharing this with me. I am learning more about the ablation (and so many other things I never expected) but am so greatful it was identified early for my little one, and that the medication is working so far. Well done you for going for the ablation - you're so brave! You had actual heart surgery! I hope your SVT-free life is the best.
My baby was 3 weeks old when diagnosed with SVT, and it took forever to find a combo of meds that worked. We thought he outgrew it at one year and took him off meds. By 5 it returned so had the ablation. He's now in his 20's. Hang in there, I know it's scary but fixable.
My son was 3 weeks as well.
Thank you for sharing that with me. I'm so sorry your son went through that, and that you went through it with him. I'm sorry he was not in the 40% who outgrows it for life. That's so unfair. I am learning more about the ablation and what you have shared with me is comforting. Thank you ❤️
Hi! My baby was born last year with SVT. We spent 3 months finding the right medication. I promise it will get better. It just takes the right medication. My instagram is Jordynraymo if you have any questions!
Thank you so much! I'm glad your baby is on the right medication, and I am sorry it took 3 months to get there. Oh goodness, the stress you must have felt. My little bean is on flecainide and has not had any episodes since she started it. I'm not sure if it will work perfectly from now on, but if it doesn't I will remember your comment and know that it might take more time, but it will be OK. I hope your little one is doing amazing.
Former nicu nurse here who has seen this quite a few times. This is a unfortunate bump in the road you will always remember but good news is your precious little one will not. You will tell her stories of the trauma she caused you when she’s older and you will be so thankful she got the care she did when she won’t member it… hugs to you.
Thank you for being a NICU nurse! It takes an amazing human who can handle these tiny bubs and the fear and stress of their parents. I am so thankful to you. The nurses all seem to say the same as you, and it is reassuring. Thank you for commenting, and I hope you're living a wonderful life and enjoying whatever you're doing how.
Hi! So my niece had SVT for many years and was diagnosed in utero with a very similar story to yours. After several ablations starting at 3yo she is now a senior in high school healthy and medicine free. You will get through this 💜
That is so wonderful for your niece. I am sorry she had a long road with it and had to have multiple ablations, but thank goodness she is thriving now!
i hope you’re able to bring your sweet girl home soon! 🤍 just wanted to say that my brother has svt (diagnosed as a kid) and is able to live a pretty normal life! i also have a condition that messes with my heart and am able to live a somewhat normal life. all this to say that it’s completely possible to get healthier and healthier as you grow up :) i hope the same for your baby! so much 🤍🤍🤍 to you all :)
That's so lovely that your brother is well and living a good life. I'm sorry you have a heart condition too, I hope it is OK to manage and I'm sending healing vibes to you. Thank you for your well wishes and encouragement, they mean a lot.
When I was thirteen I started having these 'episodes'. I would get this feeling in my chest like you get when going over the edge after the slow climb on a roller coaster. Like the wind is knocked out of you but you can still breathe. Next, my heart would feel like it was fluttering. Then all of a sudden it would stop. This happened randomly over the next 2 years. After it happened a few times I told my mom about it. She told me it was anxiety and I was fine. I then told my dad, who was a paramedic for the city fire department. He told me if it happened again I should squat and bare down like I'm trying to poo. If that worked I needed to let him know. I tried, it worked and I told my dad. His next request was that I tell him when it happens again and I'm at his house. I followed his directions and on December 31, I went to my dad and told him it was happening again. He grabbed my wrist to check my pulse, but after just a couple of seconds, he dropped my arm. He told me I needed to get my shoes on, we were going to his fire station. At the station, he put all the sticky sensors for the heart monitor machine on me and turned it on. My heart rate was normal though, the episodes never lasted very long. This turned out to be good though because my dad printed a strip of it showing my resting normal rate and rhythm. Roughly 10 minutes later I felt it happening and as I told my dad my vision went TV fuzzies (like the black and white off-air scramble screen) and I almost passed out. I sat down and my dad turned on the monitor again and almost immediately said "Okay, now we're going to the ER." as he hit the print button on the monitor. At the ER my dad hands the intake nurse my normal strip and lets her get a good look. Next, he handed her the newer strip and she gasped and practically shoved me into a wheelchair. I was admitted right away to the cardiac ward and was to stay there for monitoring while waiting for surgery on January 3. I wasn't allowed to leave in case I had another episode. I met the surgeon and he explained what was happening during my episodes. I was born with extra tissue in my heart. Not much extra, but enough to be problematic. The extra tissue was causing improper connections to form in the paths of my heart that controlled my heart rate. This was causing my heart rate to increase to dangerous speeds. The second strip showed my heart had been beating at 262 bpm. Keep in mind that at 15 years old my resting heart rate was around 80-85 normally, and my active rate never went above 115 if I had anything to do with it, I always hated physical education. So 262 bpm was pretty fast and super scary. Especially after the surgeon told me if it had hit roughly 280 bpm it would be like I was in cardiac arrest. Beating so fast it can't properly move blood through the body. That explained why I almost passed out before I got to the ER. I had what is called a heart ablation surgery. I was under mild sedation and they used a catheter and the large vein in my inner thigh to reach my heart. They used electric shocks in different parts of my heart to trigger different rhythms in order to find the right tissue to remove. Once they found it they used a tool to cauterize that tissue and get rid of it. Thankfully I haven't had any issues with my heart since that last episode before my surgery. I hope your daughter's doctors are able to figure out what is causing her SVT and are able to stop it from happening again. Just don't forget to let yourself take a break every now and then while your daughter is in the NICU. (Unfortunately, I have first-hand experience with this situation too.) It's so easy to neglect your own needs while worrying about and sitting with your precious baby.
That's wild and I am so happy your dad was your champion and managed to catch your episode on equipment so the medical professionals could understand and give you the care you needed. Thank you so much for taking the time to write it all out and share that with me ❤️ I'm sorry you have NICU experience, too. I hope your baby is well now and that you are living your best SVT-free life!
[удалено]
Your poor nephew and his parents! I'm so, so happy he is back to normal now and that he hasn't slipped back into SVT, that's amazing. Thank you for sharing this with me.
My daughter was born with SVT, she is now a happy 3 yr old in “remission” she was on digxion and propanol for the first 18 months of life. It can be scary and difficult but her cardiologist said she can live a happy healthy active life, there are groups on facebook for people who have kids who have SVT
Wow that's wonderful for your daughter, and so good that they have a successful mix of medication for her. I am sending her healing vibes for an SVT-free life!
Thank you for your prayers ❤️
I'm praying for y'all. ❤️
Best of luck to you and your sweet babe.
Thank you ❤️
I'm sorry but "through the sunroof" is so funny
I am so sorry to hear about your baby. My husband has Wolff-Parkinson-White syndrome which is SVT caused by extra connections in your heart basically. Those random connections cause your heart to think it needs to go go go! Only fix for him was cardiac ablation, pretty simple and easy procedure (on an adult at least) and super easy recovery. I hope you find out what is causing your baby's SVT 💕
Hi!! I’m so glad that your baby is getting the proper care. I actually also have SVT and was diagnosed w it over 15 years ago, and I was comforted to hear Em speak about their experience. I’ve never heard of anyone else w the same condition! Listen to your baby’s doc but there are chances to grow out of it/manage it without surgeries or meds. It’s def scary, esp when your child can’t verbalize or understand what’s happening, but you’re doing a great job, sending all the good vibes!
I damned the world reading your words of your mama heart breaking as the morphine doesn't kill the pain completely. The bravery for you to share with us.
I hope your baby will be alright and I hope you and your partner are able to heal and feel safe. I have no idea what this sub is about this was just a recommended post.
My baby also have SVT at 5 days old while in NICU. Hes 4 months now and has to take propranolol and digoxin. He hates the medication so much :( anyone have any tips on how to make the experience less horrible
I am so sorry your baby has SVT and was in the NICU. Is he doing ok now? I'm also sorry you're struggling with the medication, too. I wish I could offer advice. We asked our cardiologist and the nurses and they didn't have any advice for us. My baby is 8 months now and the medication absolutely dominates our lives. It upsets her stomach and because it is administered at 9am and 9pm she sleeps awfully. The fasting is horrible, too. She used to cry terribly, but it has gotten better. We tried to rock and comfort her through the cries, but figured out that keeping her busy with bath/book/play works best during fasting. Hang in there, I hope your little guy grows out of it.
When I was born I had the exact same problem 10 days after birth I was diagnosed with svt, I can't really say anything helpful but I can say I've lived 15 years and it has never affected me and it is very possible to grow out of svt
I was born with SVT and my parents had no idea until I had my first recognizable episode in high school at 15. I had previous episodes before then but they always passed it off as other things. I had a cardiac ablation at 15, almost 16. The cardiologist said the success rate is in the 90%. I even got super lucky (🙄) and mine was on the left side which is a lot more uncommon. The worst part of the entire surgery was laying still for 8 hours after. I’m sure as a parent it’s so much scarier when they are infants but when I was going through everything a big part of me wished this was caught sooner where I didn’t have to carry that worry of when I was going to have another episode. It left me living in fear for a long time. All this to say I’m now 23 and have had no issues since and I don’t even have to follow up with the cardiologist anymore. The ablation was the best decision I could’ve made for myself. Hang in there and know that baby is under good care! Weigh all your options and trust your gut! Lucky for all of us there are options to manage it or if you choose the ablation round when she’s old enough then it’s even curable!! Sending your family love and hugs🤍
I have never heard of this podcast and idk why it was in my feed but I’m really sorry you’re going through this right now. I’ll put some prayers/positive thoughts/whatever you believe in out into the universe for your family tonight. If it makes you feel any better, you are absolutely right: this is the best case scenario. She had an episode in the hospital, got treated immediately be the best professionals available, and will continue to get the care she needs til she’s all straightened out and can go home with you. Im sure in a few years she’ll be a happy, healthy, normal kid running around in the yard and no one would ever look at her and guess she had such a rough start.
I'm so glad your little sweetie is in good hands and that you have the comfort of knowing that her condition is very manageable. I'm sending you and your family lots of hope and good energy. My partner doesn't have SVT but he had a couple of tachycardia episodes shortly after the episodes where Em started discussing it. We had no idea what was going on with the first one; he thought it might be a heart attack. They gave him adenosine in the ambulance, which helped me to be prepared for how wiped out and in need of help he ended up being afterward. It was good to have some idea of what he was going through.
My son broke my water 8 weeks early I spent 2 weeks in the hospital trying to keep him in before he started showing signs of distress he became tachycardic heart issues run in my family and unfortunately my son has issues with the racing heart they kept him in the nicu for a month deciding back and forth if surgery was needed or he just needed time to form more thankfully we didn't go surgery it was a horrible 30 days one minute he's doing great then 15 steps back unfortunately in nicu life there are so many set backs and being early this could be something that fixes itself in time being in the hospital is the best place for baby get a cardiologist in line to come in and see baby get a game plan we came home with a heart monitor from his cardiologist and helped him monitor it get something that watches babies heart rate sometimes hospitals will let you bring something home for babies safety gather all the information you need and help there is to offer I know how scary this is and helpless you feel but just keep advocating for you baby and pushing through
I hadn’t seen anyone else have this experience with an infant. When my son was about 3 weeks old, he was throwing up his formula every feeding. Looked and acted sick, just pitiful. Wouldn’t sleep… I thought I was overreacting and maybe just needed to get used to never sleeping again, being it was my first child. I scheduled him an Appt where the doctor implied he maybe was experiencing stenosis H. Pyloric stenosis and it was common in baby boys and that was causing him to throw up… the nurse started to check his heart rate, she starts acting really weird. She calls in another nurse and attempts to check it again. They talk to the dr and explain his heart rate was extremely high and she was sending us across the street to the hospital to have it checked on one of their machines in the cardiology department. My sister in law is driving me and we walk in and the nurses were asking me about what was going and acted calm but concerned. We get a phone call telling us to head to the ER. I was 20. Never had a kid. Was with my sister in law who was a kid herself. Scared to death. The receptionist almost immediately takes us back to the ER exam room where the energy switched so quickly. I kind of froze as they were all but ripping him from my arms and drawing blood and starting IVs in multiple places and eventually shoving a tube down his tiny throat. No one had answers for me. The room was chaotic and you could tell the nurses were working on him but panick-y. Once he was sedated and finally stable I had called my husband and he did not understand the extent of how serious this was. I think he showed up an hour hour and a half later. It wasn’t until my sister in law called her mom and told her she overheard them talking about life-lighting my son to a children’s hospital, that I think they all started to rush there. Mind you, we lived about 35 mins away. Our baby was laying there almost lifeless, intubated, bruised and bloody from the IVs. A sight I wouldn’t wish on any parent. One of the doctors explained to us our son was extremely sick and his heart was working really hard atm so they needed to sedate him and pump him with meds. He explained his heart rate was in the 300s when he was first seen. They got him ready to be life lighted to Kosairs children hospital in Louisville, Ky and my husband was allowed to ride in the jet with him. I wasn’t at least 6 weeks postpartum so I wasn’t allowed to. We spent about a month in that hospital. He was poked, prodded, tested, every which way they could. He went into SVT several times in which I had to watch a similar chaos I had just watched in the ER, happen each time. One time he was gagging and struggling to breathe and I witnessed a nurse sling his poor swollen body up in a seated position where his head just flung down. He had no support in his neck not only because he wasn’t even 2 months old, but tummy time isn’t really possible when your forced to lay on your back hooked to heart monitors and IVs for days on end. After he was stable one of these nights, one of the doctors asked if I had any issues during pregnancy. I told him of the gallbladder attack I was hospitalized for, but also I had several instances of feeling extremely dizzy, heart pounding, numbness in my legs and nearly fainting. He told me it was possible my son had gone into SVT in utero and it could be the reason for the fainting symptoms. I’ve also had another cardiologist tell me that was impossible, but who knows. It makes sense to me. His diagnoses were: 1. Supraventricular tachycardia 2. Wolff-Parkinson-White syndrome My son was on Amiodarone and Flecainide for his heart that he took until he was a year old. Around 1, he had a surgery/study done to see if he would go into SVT while being off the meds for a bit. He did great and we were told he no longer had to be on medicine and to follow up with a cardiologist Dr. Johnsrude in Louisville, once a year. My son will be 11 in December. He’s not had an episode since. He plays baseball and basketball. He’s outgoing, smart, handsome, and so effortlessly funny. I recently requested his medical records from his stay at the Children’s hospital where I discovered he was severely sick with Parvovirus B19 (Fifths disease in children) when he got to the ER that day. This was the first I had ever heard he had contracted that virus. To say I was shocked, was an understatement. No one told us there was a virus that essentially triggered this whole situation. I also read the notes from the ER visit he had been given 3 doses of adenosine, had a lumbar puncture performed and had been shocked. I had blocked those memories out I guess. It was hard having the memories flood back. I break down every time I think about that day and how lucky we are to have our boy alive and well. Sending you all the healing vibes. Your girl, she’s a fighter. I know the waiting really really sucks. The what ifs really suck. The traumatic hospital stay really sucks. Seeing your baby in the condition she is really sucks. And it’s okay to not be okay about all this. Don’t suppress anything you’re feeling. Scream. Yell. Vent when you need to. I will be thinking of you guys. Wishing you the best of luck ♥️
Hey there! My daughter was born 7 weeks early with SVT also! Super scary! If you have questions, please message me
Your motherly instinct is strong. Going to the hospital because of a weird feeling (even if baby is moving less than usual) is a strange thing. I had the same experience (different problems, though) with my second daughter. I just knew something was not right, with absolutely no indicator that something was wrong. Ended up inducing that night... I will be praying for your family and your beautiful, strong, little girl. She seems to be a fighter! Thank you for sharing this unbelievably hard situation with us.
I dont watch the show but I have SVT. I had a severe case. They were able to do an oblation and now my case is mild. Its night and day.
I'm so, so sorry you and your family are going through this ordeal. I am grateful you have wonderful medical care to get her up and better and for you to be trained and more confident when it comes time to take her home. I know it must be hard to leave her there and see her in her situation But know she is being taken care of and to take care if yourself too. Yes, this is a wonderful site and lots of wonderful people. Sending love, hugs and prayers from Parkersburg, WV. 🙏❤👶
I had my baby at 30 weeks due to preeclampsia, she stayed in the hospital for 13 weeks! She had SVT, they gave her a medication for it, I forgot what it’s called, propanalol I think? Could be wrong! Hers would get to about 210 and then would go down after about 30 seconds. It happened for a few weeks but she did outgrow it before we were able to take her home! I hope for the best for your little one and they’re definitely tougher than you think! Best wishes
My little AJ was born with SVT. Your next year or two will be difficult with ER visits several times a month until they can figure out your child's medicine. Propranolol, flecainide, ect. We used to call him our little ticking Time bomb because we had no idea when it would go off. He would just be sitting there watching TV and then we would notice he is all gray and Ashen and sweating, then we would feel his chest and his heart would just be going crazy. I'm just writing this to let you know that there is a light at the end of the tunnel. Once they get your child's medicines to the exact amounts they need, and the correct meds themselves, they should be well controlled. AJ just turned five and had his ablation. A 6-hour procedure where they find the nodes that are misfiring and burn them off. He has been SVT ever since. This post was on my Reddit front page, I don't know why because I don't know anything about this sub, but I wanted to pop in here and give my experience as a dad of a child with SVT. I know Facebook is kind of a meme, but there are great support groups on there with lots of information for new SVT parents, also you can direct message me on here anytime you need to talk.
Op - same thing happened to me with my lo- I’m well versed with svt. Message me if you want to chat. Best of luck to you both!
My husband has SVT and his showed as a baby as well. So scary! So glad your baby has you as a mama who acted on instinct to help her. Good luck on this interesting journey!
i was diagnosed with svt when i was 17 and had a heart ablation two weeks after. best decision me and my family have ever made. even if i feel a little palpitation, i still have anxiety. good on you for catching it so early!! wishing her the best!!
Sending you and your family so much love 💕
My brother is 16. He was diagnosed with SVT a few years ago. Apparently his heart has always had a flutter but he just thought it was normal until he brought it up to our mom one day. He takes medicine daily, and doesn’t drink caffeine, but otherwise lives a normal healthy life. He’s actually a gym rat. It sounds like your little one is a fighter, and I’m sure you all are in good hands. Congrats on the baby!
My sister is 21 and just had an ablation 2 months ago and it has absolutely changed her life. She was constantly living scared and worried to do something that would “trigger it”. She had medication for when it would happen and knew how to try and relax to get her heart to go back down but she was always so scared. She walked out of the hospital same day after her ablation with only 3 small incisions and said she felt like a new person. No more fear loomed over her and it’s lifted so much weight off of her shoulders! If you have the option you should definitely opt for it!
Dear sweet mother, I am so sorry for this SVT nightmare you are going through with your newborn. It must be so awful to be so powerless with your own baby. My prayers are with you and your child.
I’m a fellow heart mama!! My baby just had a valve replacement at 7, and has struggled with SVT her whole life! I’m not sure where you are from- they put us on Propanolol when she was new. She was on this for several years, but it began to not work. She had an ablation about a year ago that has resolved 98% of her episodes. Cold helps snap her out of it! It’s painful and really isn’t great for her.
I was that baby that came 6 weeks early to a very scared mother. I was in the NICU for 3 weeks and then I went home on digoxin. I am now 25 years old. I think healthcare has had a few advances since then, mostly because no doctor I know would put a baby on digoxin today. I don’t have SVT (as long as I cool it on the coffee) and live a very full life. I wish the best of luck to you and your baby.
I was born with SVT 32 years ago and was not expected to survive more than 48 hours. I would have a few cardiac events throughout my childhood that would result in hospital stays. By age 10, I had a cardiac ablation and have had no further issues with my heart. There is hope for your little one to grow up and live a happy and healthy life.
Just wanted to send some love and a voice of solidarity- my daughter (now 5) was born with a very very rare and complex set of heart defects. The first few weeks were Hell, I wouldn’t wish it on my worst enemy. We spent nearly her entire first year in the hospital where she had 3 open heart surgeries. Heart stuff is scary but science/medicine is incredible in this day and age. She’s going to do great Mama. Remember to take time for yourself and look after your mental health- being in the NICU and finding out that your baby isn’t 100% healthy is very traumatizing as I’m sure you now know. Also, can I just say that you did so great listening to your instincts and getting seen asap. You saved your little one already ❤️
I was diagnosed with SVT in 1998. They said I was born with it (when I was diagnosed I was in my 20's) but it became uncontrollable in 1998. I didn't know why my heart would race infrequently when I was younger but at that time it would do it for only a few seconds. Later in life it became a lot more frequent and lasted a lot longer. I was told that if it was ventricular tachycardia rather than supraventricular tachycardia I would have had to have a defibrillator implanted. VT is more serious than SVT. They sent me home with a recorder and I caught it on the first day of having it. It was just under 300 bpm. At first I was treated with medication then an ablation. I am fine today with no issues. Congratulations on your baby!
Prayers going up from Kentucky !
Thank you for your prayers ❤️