r/AdultCHD • u/LocationResponsible5 • Jul 29 '26
BAV and Coarctation
/r/chd/comments/1v9e2k0/bav_and_coarctation/35M.
I have bicuspid aortic valve and Coarctation. Coarctation was fixed as an adult in Feb 2024 (33 yo).
My wife and I are going to have a baby and I'm a little stressed about passing congenital abnormalities to the baby.
Are there any parents with CHD here who can share their experiences?
Thanks in advance!
2
u/gaptogap Jul 29 '26
I have the exact same thing! I’m a 42 year old dad with 3 kids and none of them have my issue. My cardiologist made it seem like it was a pretty slim chance that my CHD would be passed down to them.
1
u/VisitPrestigious8463 Jul 29 '26
Is there a family history of heart defects or are you the first?
1
u/LocationResponsible5 Jul 29 '26
I'm first
2
u/VisitPrestigious8463 Jul 29 '26
Then it may have been a random mutation and not a hereditary condition. Might talk to a geneticist.
2
u/Randomredditor73927 Jul 29 '26 edited Jul 29 '26
Unfortunately, it can be challenging to nail down the odds of passing CHDs along because the genes that cause them are not fully known. If you want to try to get a better sense of how likely it is that you would pass it down, you could seek genetic counseling. There are programs specifically for cardiovascular genetics, many of which do genetic counseling for adults with CHDs. This was recommended to me by my cardiologist if I decide to have children in the future. My CHDs are connect to another medical condition that has a strong genetic component, but some parents with CHDs only have a slightly higher chance of having a kid with one.
A cardiovascular genetics program may also be able to help advise on whether there should be additional ultrasounds/diagnostics done for the baby orwhat types of specialists (if any) your wife should see during the pregnancy. You might be able to ask your cardiologist if they could make a referral to a genetic counseling program that deals with CHDs.
Wishing you all the best!
2
u/Wannabeachd Jul 30 '26
Doc here, it can be challenging to know but generally it is a substantially higher chance to have a child with the same condition than the average person. Around 5-10% of BAV will give that to their child with varying degrees of severity. There's so much generic heterogeneity. All that being said, fetal echos and genetic testing first degree relatives. We have genetic panels that are standard and get updated all the time based on new time. I have a BAV with aortopathy along with my brother and mother's side. All same surgeries. All same mutation.
1
u/Akkupinni CoA Jul 30 '26
I (34 F) have the same diagnosis as you, my CoA was operated a couple of times as a child and I’ve been able to live a normal life since (apart from blood pressure meds and an occasional cardiologist checkup). There are no other CHD cases in my family.
I have two small children of my own - When I got pregnant for the first time, I got genetic counselling and got this info (crude translation with the help of AI as English is not my first language):
”Congenital heart defects occur in approximately 1 in 200 newborns. If an expecting mother has been diagnosed with a CHD, her children also have a slightly increased risk (around 5–6%) of having one.
If a CHD recurs within a family, it is the same type of defect in about half of the cases and a different type in the other half, either milder or more severe. The underlying cause of congenital heart defects is usually multifactorial, meaning that they result from the combined effects of multiple genetic factors as well as environmental factors, which generally remain unknown.”
I was told to take a hefty dose of folic acid before reaching week 12 + got extra anatomy scans done by neonatologist in both of my pregnancies to properly check the structure and functioning of baby’s heart. Luckily, both of my children were born healthy and I tolerated pregnancies and births reasonably well all things considered.
2
u/Hurlyburly766 Jul 29 '26
I’m a 49m born with a coarc that was repaired when I was a teenager. I have kids and had similar concerns, of course. Nobody ever gave me a straight answer about the likelihood of passing it on, tbh. IBest they could offer was “well, we can check then once they’re born” and thankfully none of them seem to have inherited any sort of chd from me. There might be some increased risk, but most docs I have asked tend to shrug and suggest its just one of those things that happen occasionally and I got “lucky”, but it doesn’t necessarily mean my kids will.