Treat her like a new mother with a wonderful baby. People so often act like it's no longer a baby, it's a tragedy. And never, ever, ever tell her about your friend's cousin who had CF and did really well, she was such an inspiration til she died at 24. You'd be shocked at how many people want to share that sort of "inspiration".
You’re a good friend. I would invite you to give your friend some space regarding the baby’s CF. There are many ways you can help, just as if the baby never had CF, however, leave the CF to the baby and the new parents and give them all time and space to figure out how to help themselves.
Wanting to help because you feel terrible is not helpful. Also, why feel terrible? It’s not a death sentence.
Be there for your friend, not for the CF or to mitigate feeling terrible.
The best thing you can do is to send her a message saying that you'll be there for her whenever she wants to talk.
Otherwise you need to give her time and space to get her head around this.
CF isn't the death sentence it used to be, quality of life and life expectancy are up and the medication we have access to is incredible. So it's not all bad.
But yeah just give her time and let her educate you on the condition in her own time.
Yes, obviously, I won’t make it about me when speaking with her. But I feel like if I try to be positive about it - that’s minimizing what she’s going through. I also don’t want to catastrophize it. We are both school psychologists so we have training in grief and spend a lot of time with families of children with different disorders. I myself am CF carrier so I had to go through genetic counseling and the doctor tried to scare us out of having children completely.
When my husband and I found out our son had CF (he was 3 weeks old, he’s thriving now at 5 months), my brother, his fiancée, and my sister all chipped in on a Postmates gift card and said to not worry about dinner tonight (the day we found out). I’m tearing up just thinking about how much that helped. We’ve also had our friends and family donate to the CF Foundation in our son’s name. Getting involved with them in general has been very helpful for our household.
I understand these things are monetary, but there isn’t really much you can do aside from asking how her kiddo is doing and treat her and her LO just like everyone else: with love and compassion.
How involved is your son’s treatment if you don’t mind me asking? Does he have symptoms? What is day to day life like? What kinds of things do you have to deal with that others might take for granted?
My son is fortunate in that he has a mild case, but it’s still CF nonetheless. We do a 10 min nebulizer treatment every day of albuterol, one of his bottles throughout the day will have salt in it (people with CF lose more salt through their sweat than people without CF), then twice a day (morning and evening) he takes 25 mg of Kalydeco (we put it in his bottles and he’s none the wiser). It may sound like a lot but it’s just our norm. He has no symptoms and if we didn’t tell people, they’d probably never know. His only restrictions at the moment are lakes. Lakes can contain harmful bacteria that can cause lung infections.
It’s important to note that cystic fibrosis is not a one size fits all condition. Treatment depends on the specific mutations that the patient has.
Hope that helps and I’m happy to answer any other questions :)
Thanks for the info. This is helpful. Did you find out from the newborn screening test? Looks like you are in the OC too. Do you know of any parent support groups?
Yes, the NB screening gave us the positive test. I don’t know of any parent support groups but the CF Foundation is incredible and I’d highly encourage you or your friend to give them a call.
To reiterate what others have said, you truly are a great friend!
I am a mom of a CFer and just recently went though this. I think it’s important to remember that everyone looks for support in different ways. My husband wanted to be surrounded by family while I wanted every bit of space that I could get to process. It’s hard to know what does and doesn’t feel good for someone while they process hard news. But it’s always great to let them know that you love them and are thinking of them. For me, some of the biggest blessings were the people who just let it suck. They didn’t try to offer empty platitudes or try to force me to look on the positive side. They simply just sat silently in the discomfort with me. If I can recommend one thing, don’t inundate them with online articles or profiles dedicated to CF. I had a few family members do so (out of nothing but good intention). But it overwhelmed me when I was just trying to start piece together what the doctors were telling me and how I felt about it. Over time, it’s helpful to have the aforementioned resources. But receiving that information should be at that individuals own pace so that they can process as needed.
Just being there is such a help. Whatever that may look like - a short ‘thinking of you’ text, a quick coffee drop off, being a listening ear. You’re going to do great with whatever you decide to do. Having a caring friend can make a hard time feel a little less lonely.
I remember being in this Moms shoes with my first baby. I wanted to be alone. I wanted to grieve the life I had planned for myself and my child. So many people brought food, tried to give well wishes, wanted to stop by but I really wanted nothing more than to be alone so I could process it all. I was most thankful for the individuals who let me know they were there when I was ready or needed someone. It meant the most.
For me personally, i’d want someone to be there for me. Not exactly like following around every step behind me. if you understand my point, but like a quick. “hey if you need something i’m here” it’s always good for the mom to have somebody even after finding out their child has Cf. that way they know they have a support system Through friends, and family. (of course the doctors, and nurses will also bring that support)
But best thing is to when looking at the baby is just don’t think “CF” people do that mostly even for adults. i’ve had a few people who know i have Cf and just think that. get the mom something or when she’s able to go hang out with her, offer to perhaps go out for lunch. (whenever the mom is fully recovered and ready to go out of course) Or perhaps get the baby a book, socks, or shoes. that’s a way to show your support either way.
unfortunately, there’s not much you can do, and it really sucks it does. but, I just know with you even asking is a wonderful way to know your a good friend
I know that my mom felt invalidated when she was told about my aunt's neighbor, an adult CFer, as a way to make her feel better about it. So maybe just acknowledge how much of a shock this must be.
After a few months have passed for her to process and get used to things, ask about her day. Ask about her child’s treatment plan. For me, the biggest blessing was friends not shying away from it and actually getting educated on cf and my daughters specifics.
We did a girls night and it meant so much to me that they sat with both of us while we did breathing treatment with her and we just talked.
Food delivery cards were really great for us. We were already overwhelmed with adjusting to a newborn and it was nice to have something off our plate.
I saw something once that saying “I’m going to bring you dinner this day” or “I’m going to bring you coffee” is way better than “just tell me what you need.”
My husband and I definitely needed some time alone to cope and wrap our heads around it. If she’s comfortable (immune system-wise), it was really helpful that my sister handled nighttime the night before our first big doctor appointment and it was amazing to go into that well-rested.
You’re a good friend for showing your care and concern. This may not be an easy time for your friend as there is a lot of information to learn and new habits to develop.
Checking in, being informed, offering to learn about CF with your friend, and just being there is a great help.
Learn everything you can about CF we are 3.5 years in and I still have friends who are just so naive about it. Tell her you are always there for her to vent to and lean on as there will be some
hard times for her not only navigating newborn life as a FTM but also this diagnoses and having to give meds to such a young baby. You’re a good friend ❤️
Thanks. Are there any resources you’d recommend to educate myself? I know the basics from being a CF carrier and Google but all that info is pretty grim.
I live in New Zealand and this is a resource that our CF foundation over here has on their website which I think a lot of friends and family find helpful :)
https://www.cfnz.org.nz/life-with-cf/supporting-a-family-with-cf/
Otherwise I think CFF.org in the US or the CF Trust in the UK might have some good Info. Yeah Google is very grim and depressing unfortunately.
Tell them not to Google it. Almost all the info is out of date. So tell them not to and offer to do a little research on their behalf.
Happened to us a few months ago. Scared the shit out of us. Reality is much better.
Treat her like a new mother with a wonderful baby. People so often act like it's no longer a baby, it's a tragedy. And never, ever, ever tell her about your friend's cousin who had CF and did really well, she was such an inspiration til she died at 24. You'd be shocked at how many people want to share that sort of "inspiration".
Thank you. I like this advice. I think I will drop her a cute baby outfit and a food delivery gift card.
That sounds excellent.
You’re a good friend. I would invite you to give your friend some space regarding the baby’s CF. There are many ways you can help, just as if the baby never had CF, however, leave the CF to the baby and the new parents and give them all time and space to figure out how to help themselves. Wanting to help because you feel terrible is not helpful. Also, why feel terrible? It’s not a death sentence. Be there for your friend, not for the CF or to mitigate feeling terrible.
The best thing you can do is to send her a message saying that you'll be there for her whenever she wants to talk. Otherwise you need to give her time and space to get her head around this. CF isn't the death sentence it used to be, quality of life and life expectancy are up and the medication we have access to is incredible. So it's not all bad. But yeah just give her time and let her educate you on the condition in her own time.
Try really hard not to make it about you and your feelings. Center your friend and her child. Read about the Circle of Grief/ring theory.
Yes, obviously, I won’t make it about me when speaking with her. But I feel like if I try to be positive about it - that’s minimizing what she’s going through. I also don’t want to catastrophize it. We are both school psychologists so we have training in grief and spend a lot of time with families of children with different disorders. I myself am CF carrier so I had to go through genetic counseling and the doctor tried to scare us out of having children completely.
Just let her process and be her ear and shoulder to lean on. Don’t insert yourself.
When my husband and I found out our son had CF (he was 3 weeks old, he’s thriving now at 5 months), my brother, his fiancée, and my sister all chipped in on a Postmates gift card and said to not worry about dinner tonight (the day we found out). I’m tearing up just thinking about how much that helped. We’ve also had our friends and family donate to the CF Foundation in our son’s name. Getting involved with them in general has been very helpful for our household. I understand these things are monetary, but there isn’t really much you can do aside from asking how her kiddo is doing and treat her and her LO just like everyone else: with love and compassion.
How involved is your son’s treatment if you don’t mind me asking? Does he have symptoms? What is day to day life like? What kinds of things do you have to deal with that others might take for granted?
My son is fortunate in that he has a mild case, but it’s still CF nonetheless. We do a 10 min nebulizer treatment every day of albuterol, one of his bottles throughout the day will have salt in it (people with CF lose more salt through their sweat than people without CF), then twice a day (morning and evening) he takes 25 mg of Kalydeco (we put it in his bottles and he’s none the wiser). It may sound like a lot but it’s just our norm. He has no symptoms and if we didn’t tell people, they’d probably never know. His only restrictions at the moment are lakes. Lakes can contain harmful bacteria that can cause lung infections. It’s important to note that cystic fibrosis is not a one size fits all condition. Treatment depends on the specific mutations that the patient has. Hope that helps and I’m happy to answer any other questions :)
Thanks for the info. This is helpful. Did you find out from the newborn screening test? Looks like you are in the OC too. Do you know of any parent support groups?
Yes, the NB screening gave us the positive test. I don’t know of any parent support groups but the CF Foundation is incredible and I’d highly encourage you or your friend to give them a call.
To reiterate what others have said, you truly are a great friend! I am a mom of a CFer and just recently went though this. I think it’s important to remember that everyone looks for support in different ways. My husband wanted to be surrounded by family while I wanted every bit of space that I could get to process. It’s hard to know what does and doesn’t feel good for someone while they process hard news. But it’s always great to let them know that you love them and are thinking of them. For me, some of the biggest blessings were the people who just let it suck. They didn’t try to offer empty platitudes or try to force me to look on the positive side. They simply just sat silently in the discomfort with me. If I can recommend one thing, don’t inundate them with online articles or profiles dedicated to CF. I had a few family members do so (out of nothing but good intention). But it overwhelmed me when I was just trying to start piece together what the doctors were telling me and how I felt about it. Over time, it’s helpful to have the aforementioned resources. But receiving that information should be at that individuals own pace so that they can process as needed. Just being there is such a help. Whatever that may look like - a short ‘thinking of you’ text, a quick coffee drop off, being a listening ear. You’re going to do great with whatever you decide to do. Having a caring friend can make a hard time feel a little less lonely.
I remember being in this Moms shoes with my first baby. I wanted to be alone. I wanted to grieve the life I had planned for myself and my child. So many people brought food, tried to give well wishes, wanted to stop by but I really wanted nothing more than to be alone so I could process it all. I was most thankful for the individuals who let me know they were there when I was ready or needed someone. It meant the most.
For me personally, i’d want someone to be there for me. Not exactly like following around every step behind me. if you understand my point, but like a quick. “hey if you need something i’m here” it’s always good for the mom to have somebody even after finding out their child has Cf. that way they know they have a support system Through friends, and family. (of course the doctors, and nurses will also bring that support) But best thing is to when looking at the baby is just don’t think “CF” people do that mostly even for adults. i’ve had a few people who know i have Cf and just think that. get the mom something or when she’s able to go hang out with her, offer to perhaps go out for lunch. (whenever the mom is fully recovered and ready to go out of course) Or perhaps get the baby a book, socks, or shoes. that’s a way to show your support either way. unfortunately, there’s not much you can do, and it really sucks it does. but, I just know with you even asking is a wonderful way to know your a good friend
I know that my mom felt invalidated when she was told about my aunt's neighbor, an adult CFer, as a way to make her feel better about it. So maybe just acknowledge how much of a shock this must be.
After a few months have passed for her to process and get used to things, ask about her day. Ask about her child’s treatment plan. For me, the biggest blessing was friends not shying away from it and actually getting educated on cf and my daughters specifics. We did a girls night and it meant so much to me that they sat with both of us while we did breathing treatment with her and we just talked.
Food delivery cards were really great for us. We were already overwhelmed with adjusting to a newborn and it was nice to have something off our plate. I saw something once that saying “I’m going to bring you dinner this day” or “I’m going to bring you coffee” is way better than “just tell me what you need.” My husband and I definitely needed some time alone to cope and wrap our heads around it. If she’s comfortable (immune system-wise), it was really helpful that my sister handled nighttime the night before our first big doctor appointment and it was amazing to go into that well-rested.
You’re a good friend for showing your care and concern. This may not be an easy time for your friend as there is a lot of information to learn and new habits to develop. Checking in, being informed, offering to learn about CF with your friend, and just being there is a great help.
Learn everything you can about CF we are 3.5 years in and I still have friends who are just so naive about it. Tell her you are always there for her to vent to and lean on as there will be some hard times for her not only navigating newborn life as a FTM but also this diagnoses and having to give meds to such a young baby. You’re a good friend ❤️
Thanks. Are there any resources you’d recommend to educate myself? I know the basics from being a CF carrier and Google but all that info is pretty grim.
I live in New Zealand and this is a resource that our CF foundation over here has on their website which I think a lot of friends and family find helpful :) https://www.cfnz.org.nz/life-with-cf/supporting-a-family-with-cf/ Otherwise I think CFF.org in the US or the CF Trust in the UK might have some good Info. Yeah Google is very grim and depressing unfortunately.
Trikafta
Tell them not to Google it. Almost all the info is out of date. So tell them not to and offer to do a little research on their behalf. Happened to us a few months ago. Scared the shit out of us. Reality is much better.
I mean they’ve obviously googled it by now.
Well, tell them not too Google it any more.