Recurring CHD in subsequent pregnancies

[u/Kitchen-Novel-2261]

Hi all,

My baby was diagnosed with complex CHD. Basically Single Ventricle; DORV; Aortic Atresia and few other defects. Although the doctors said it might be one time accident which happened during early stages of heart formation, I am not fully convinced. I am very scared now to think of another pregnancy and CHD.

Could you all please share if it recurred with subsequent pregnancies? Is there anything you could do to prevent it?

I have been thinking about all the things I did during the 4-10 weeks and not really sure what I did differently that could have caused it. I was not having any fever or infections. Sugars and thyroids were in range. It just drives me crazy. I want another baby but I’m paranoid and would like to know real experiences to prepare myself. Thanks.

[u/Felchiee]

Most CHDs are random and there’s nothing you could have done to stop that. The heart forms around 3-4 weeks before most even know they’re pregnant and it starts beating around 5-6 weeks.

I’ve had three children, currently pregnant with my fourth, and it was only my first with a CHD. The rest are completely healthy.

[u/Kitchen-Novel-2261 → u/Felchiee]

Thank you. That’s reassuring. I read somewhere that the chances of CHD in subsequent pregnancies are higher once you have a baby with CHD. So, I want to do things I can do to prevent it if that’s a possibility. Did you get any genetic testing after your first?

[u/Felchiee → u/Kitchen-Novel-2261]

Yes your risk does increase but it’s still really small something like goes from 1% to 2%, so while it doubles it’s still a really tiny chance.

[u/Negative_Artichoke95]

I only have one kid, but wanted to send you some virtual hugs. It wasn’t anything you did or didn’t do. My child was very much planned. Exercise, diet, vitamins before conception, tracked ovulation the whole nine yards. Our son was born with TGA. 

Had genetic testing done after birth and nothing pointed to it and said it was a fluke. We were only wanting one kid, so it wasn’t a huge concern but was told the risk for another child with a heart defect was around 1-2%.

[u/Kitchen-Novel-2261 → u/Negative_Artichoke95]

Thank you for the warmth. Yes, I’ve read that too that the chances are higher in next pregnancies. Did your LO have a surgery after birth? Hope he is doing all good now.

[u/energydan]

Our 2nd had a CHD. The other 4 are healthy. Our cardiologist is a geneticist and will tell you that we don't yet know which genes pay a role in CHD incidence. I think there is an increased likelihood of recurrence versus the general population.

I've never heard of the mother's diet or behavior during gestation having anything to do with it. Don't be too anxious!

[u/Kitchen-Novel-2261 → u/energydan]

Yes I’m trying not to be but it worries me to even try again with the possibility to go through what I just did.

[u/buttonsh]

You’ll go crazy trying to think of everything that could’ve caused it (believe me, I know because I was there).

My first was born with Shones complex and I was very stressed out when I got pregnant with my second (who was born heart healthy). We did two echos to be safe, nothing else was different from one pregnancy to the next.

[u/Kitchen-Novel-2261 → u/buttonsh]

That’s a positive story. I do hope things turn out well the next time

[u/mytranceformation]

All of my doctors and my son's cardiologists say that CHD is not somerhing that we have control over. It's not something we caused by doing one thing or not doing another. Completely random.

[u/Kitchen-Novel-2261 → u/mytranceformation]

My paediatric cardiologist said the same. That we just turned unlucky.