Pregnancy after severe HLHS

[PinkRose25]

Hi,

I am after some pregnancy stories from women who had another child after a previous child was diagnosed with hypoplastic left heart syndrome or other left sided heart conditions.
I am very concerned about the quoted recurrence rates and it would be beneficial to hear real life stories and not just some numbers from a study.
Thank you all!

Hi

Our first child has HLHS and is now 13 years old and doing well, we then had a genetic test which indicated that there was no particular risk on either side. We then had another child but during the pregnancy had detailed x rays to check for heart abnormalities. Our second child is now 9 with no health problems at all.

Thank you so much for your reply.I am so glad that both of your children are doing well. May I ask you what exactly you were tested for? Noone had mentioned genetic testing for my husband or myself. Also, did you prepare differently for your second pregnancy in view of Folic Acid? I am so sorry for all the questions but I have not really had much information from my medical team.

Thank you. There is some evidence that for a small number of cases there is a link with a mutation in certain genes/ chromosomes in the parents. We had a referral on the NHS to a consultant who studied our genes and couldn't find any of these in our case which gave us more confidence to have another baby. My wife took folic acid during her second pregnancy and took the normal precautions and advice which is recommended for a healthy baby. It was a worrying time but in the end we had a healthy boy who has been a wonderful brother to his sister. Another consideration is by having a second child it takes some of the worry off the first child which perhaps provides a more healthy environment. We have always tried to normalise things for our daughter and to take it one day at a time. Best of luck!

In October 2019 we found out our little boy had HLHS it was at the 20 week scan. We terminated due to it being a severe case and he was unlikely to survive.
I got genetic testing which case back clear. They have to take a piece of the placenta and skin from babies thigh to test this.
The dr stated this condition is usually just a random occurrence and no explanation for it.
I now have a healthy three month little girl, I got a 16 week scan to check her heart and was well looked after. I didn't do anything g differently apart from worry more but all was well.
Message me if you would like to chat x

My second child had a left sided heart condition and died shortly after birth. She had genetic screening that came back clear, just a random event as far as we know. We have since had a healthy pregnancy, we had additional scans with fetal cardiology starting at 16 weeks plus growth scans at our local hospital. I took folic acid with both pregnancies.