Tagged: CF and breastfeeding
June 19, 2020 at 10:34 am #15195
My husband and I just found out about a week ago, through CVS, that our baby (still pregnant) will be born with CF. We are both carriers of the Delta F508 mutation.
We are new to this community, and are looking for any advice and information.
June 21, 2020 at 2:13 pm #15197Paul met DebbieParticipant
For now I think most important is you make sure your baby is delivered in a hospital that is also a CF centre. A pediatrician who is experienced with CF should be supervising, because sometimes there are complications due to CF that should be recognised and remedied right away after birth.
The specialists in the CF centre will be able to guide you all the way step by step with everything that might be needed in special care related to CF after your baby is born.
There are also cf-patients associations in most countries that have a lot of easy understandable information available and where you can talk with other parents.
57 years ago when I was born with CF, there was little knowledge about the disease and only few medications. Fortunately nowadays this is completely opposite. There is all reason to expect your child will lead a full and happy life despite having CF.
Try not to worry in advance and enjoy your pregnancy. It will all turn out fine.
I wish you all the best!
June 21, 2020 at 10:38 pm #15198
Thank you so much Paul! Really appreciate the info and the encouragement.
June 23, 2020 at 6:37 pm #15202Julie MartinParticipant
Do you have a CF center near you? Check out the cystic fibrosis foundation to help you locate one. There is such great treatment and care available for CF now! I’m 54 and my care is at the University of Washington. Good luck! I’m healthy and hope your baby will be too. Ask questions of me anytime-would love to be a resource. Julie
June 25, 2020 at 11:11 am #15215ljberkParticipant
Hey Ashley- wow. I do remember how that feels. My two with CF are now 30 and 32 y/o and both doing really well. There have been challenges, to be sure, but remember that when mine were diagnosed absolutely NONE of the new therapies were available. While nobody wants their baby to have CF, he or she will definitely have a completely different life than folks from my kids’ generation. Now there is hope and tons of research.
There is only one piece of advice that I’d give you (because I’m sure you will mainly lean on the CF team): think about breastfeeding. Its probably in your plan anyway, so this is just remember of the immune and microbiome advantages he/she will have. Human milk is even anti-viral and anti-inflammatory, responding to your environment every minute of every day. When it gets hard or when your providers say “you tried” or someone hands you free formula, reach out. I am a lactation consultant, and there are lots of us out there. It can be hard, especially when your baby is fighting infection, his/her weight gain is not great, when you are exhausted or your breasts hurt, LEAN ON US. I am 100% available. Libby
June 25, 2020 at 5:34 pm #15217
Thank you everyone! There is so much unknown right now, so I really appreciate the guidance from you all.
I will be calling the Cystic Fibrosis Foundation to help locate a center and for more help in finding a good team for him.
I so agree about the breastfeeding Libby. Very important for multiple reasons and definitely something I plan to do. I will reach out if there are difficulties, thank you!!
You three have given my husband and I some much needed information and most importantly hope! We can’t thank you enough for taking time to respond.
June 29, 2020 at 12:43 pm #15216Gary LevinParticipant
Ok Ashley. You and your husband are carriers, which means you each carry at least one 508 mutation. Each gene has two loci, one may be normal. The highest probability if you are both carriers is that your child wouldl have a probability of having CF is 50/50, the same as flipping a coin. So you have a good chance at having a perfectly normal child. The test that was done on you and your husband was on your own genome, not the baby’s.
If you really want to know about the baby you will need to have an amniocentesis to examine the baby’s blood.
There are some risks to the baby to have this test, and you should discuss it with your OB/GYN.
My advice is:
Go to a CF Center for evaluation. They are experts. And will advise you where to go for delivery and post natal care. No matter what you will love this child as a special person. He will probably live a long life now with the revolutionary developments during the past 30 years.
My son is now 31 years old. When he was 4 mos old he was diagnosed with CF in 1988 and we were told average survival was 9-10 years. He now is on the latest medications, his lung function is over 85%.
I bet your baby will be normal. He will be tested when born anyway, so don’t do an amniocentesis. Don’t consider terminating his or her life….He/she will be a blessing to you and the world. You are all in my prayers. g.m.levin, m.d.
June 29, 2020 at 2:40 pm #15231JacquiParticipant
I have a 2.75 year old daughter with CF, and she’s thriving! My husband and I found out we were both carriers (W1282X and F508del, respectively) after I got pregnant, and then we confirmed with an amnio (I was too far along for CVS at that point) that the baby did indeed inherit both mutations and therefore had CF. We never considered terminating the pregnancy, but we did want to have time (5 months!) to educate ourselves and prepare mentally and emotionally. I felt that many of the genetic counselors and some doctors we encountered within the typical maternal/fetal medicine departments were strongly/repeatedly encouraging termination, but that was a non-starter for us. I also think that many of those people encouraging termination were not up to date on current/upcoming treatments and how that affects prognosis.
A few days after we got the amino results, I self-referred to Columbia’s CF center (in NYC); I think they were a little confused when I called because we didn’t actually have a patient name or date of birth or SSN yet. But I had the genetic counselor fax the amnio results showing both mutations, and they were able to set us up for a consultation with the director of the pediatric center (for all I know, he met with us as a courtesy instead of as an actual appointment). He was a wonderful doctor who answered all of our questions and was really quite positive about the outlook. With the diagnosis, I had ultra sounds every 4 weeks for the remainder of my pregnancy because they were monitoring for any potential CF complications, and when I eventually had a c-section (she was breech), they made sure to have the NICU fellow in the room (rather than just an attending).
We’ve been through some challenging experiences, but because she was our first (and only) child, this is just normal for us. Also, I breast fed until she was 1 year old and I think it was great for her. Is this your first child? Where do you live? I’d be more than happy to email privately with more details or speak on the phone. Let me know if you’re interested and we can figure out a way to get in touch.
July 6, 2020 at 1:05 pm #15242Paul met DebbieParticipant
Gary, you might have missed the fact that Ashley mentioned there was a CVS done, so the genome of the fetus was tested positive on having CF (inherited the CF gene from both parents).
Without a test, the statistical chance of the fetus having CF would have been 25%, since CF inherits recessively. And 50% on being a healthy carrier, 25% on being a non-carrier.
July 7, 2020 at 10:27 am #15251Jenny LivingstonKeymaster
@ashjeand Hey! In response to your question, I’d like to tell a quick story:
I clearly remember an experience when I was 19 years old. I was sitting in the hospital lobby after a CF clinic appointment, and a woman was sitting across from me with her baby. She was holding a binder labeled ‘What Comes After Diagnosis’ and she was sobbing into the phone. “They say its something called cystic fibrosis. I don’t know… I think it’s bad.”
I knew her baby had just been diagnosed. I could see the pain in her eyes and hear the fear and panic in her voice. Part of me wanted to reach out and comfort her but I was young, not very confident or sure of myself yet, so I sat there silently. I’ve thought about that day probably 100 times since then. I wish I was brave enough to approach her. I wish I would have the confidence to tell her that things would be okay.
What I would have told her if I’d had the guts is that, yes, CF is hard and scary. It is by no means an easy thing. But there is so, so, sooo much hope! We can, and do, live absolutely beautiful lives despite the challenges that CF brings. The face of this disease has completely changed in recent years and there are so many new treatments and medications available. You, as parents, have every reason to be hopeful and optimistic!
There are many great resources: this forum, facebook groups (although, admittedly, some of them can be a bit overwhelming), following members of the community and the CF Foundation on social media. The online CF community is strong, connected, supportive, and… amazing! I like to say the CF community is like the family you never wanted but are so incredibly thankful to have.
July 7, 2020 at 3:55 pm #15259Bailey VincentKeymaster
Ashley, Congratulations on your baby! How has your pregnancy been feeling so far? You received such a plethora of amazing advice here from parents of CF kiddos, or fully grown healthy CF adults, that I thought I could quickly give you some encouragement from my own path?
First, I didn’t know I was sick until I was a young adult (late diagnosis), so adjusting to treatments, meds and repairing a lot of the damage that had been done in my ignorance was an undertaking. One positive perspective to embrace, should you feel so, is that your little one will have the ability to be knowledgeable, informed, and confident from the start! I would suggest making treatment times something to “look forward to”, if and when that time comes. In knowing this ahead, you can geek-out as a Momma and plan for positive ways to naturally integrate healthy habits into your little one’s life!
I love all of the insight about finding forums (like this one), support groups, and so on. As Jenny mentioned, some can be sort of toxic at times (I avoid the Facebook groups like the plague), so take your time finding “your people”. I follow people on Instagram who handle sickness in the same way I hope to handle it, and disengage with those that add to my anxiety. I think that’s an important component of being thrust into any new community: guard your heart, go slow, and find those that truly encourage you!
One advantage, however, of not knowing I was sick when I was younger, is I never felt like my childhood was any different. I was able to dance, play, climb trees, be a wild child, and I truly believe (looking back) that is some of what kept me healthy for so long. Dance has been a huge part of my mental and physical health, so I would encourage your babe to play, participate, and find activities that fuel their passion once they’re old enough. Staying active and motivated is a HUGE part of dealing with any adversity in life; one we often forget
Like everyone above said, it really is possible to have a fulfilling beautiful life (I’m the mother of 2 girls, and Jenny- who commented above- is the mother of one!), but I also think it’s okay to take the time to feel whatever you need to feel too. If you need a day or two to grieve the path you didn’t expect to travel, or need someone to vent to if you’re feeling overwhelmed.. We are here for you!
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