Genetic Disorders Expert Forum
Hypoplastic Left Heart Syndrome
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Hypoplastic Left Heart Syndrome

I recently gave birth to my first child, a beautiful baby boy born at 32 wks 2 days gestation via emergency c- section; small for his gestational age (2 lbs. 9 oz.); had Hypoplastic Left Heart Syndrome (known since 19 weeks gestation). At 19 weeks preg., I had an amniocentesis performed and there was no chromosomal abnormalities or neural tube defects, and once he was born he looked PERFECT except for his heart. We tried but lost him when he was 3 days old. Several doctors have told us to go ahead and have more children, even though all the latest studies show left-sided heart defects tend to run in families & advise to have all first degree relatives checked once a baby is known to have a major defect like this. From doing our research, my husband and I had echocardiograms to check our hearts, to see if one of us had an asymtomatic heart defect that would lead us to better understand what side of the family our son got his left-sided congenital heart defect from. Unfortunately we found the link, as these tests showed my husband has a Bicuspid Aortic Valve. We know the odds of future children just from my husbands defect have a higher chance of some kind of heart defect, & then added on to that we know by our son having HLHS each future child has a 1 in 12 chance in having HLHS or 22% chance of having some other left-sided heart defect. I am 30, he is 27. We are devestated at the loss of our son. I am so afraid of getting pregnant again and passing on another severe defect to another sweet baby. Is there any information or test that a genetic counselor could provide that could help us know the odds better, or prevention more likely, or would we just be wasting our time since we already know that the chances are higher for more left sided defects in future children? Do you know any other information to help us? I don't think they have found a definite link to specific genes, just ideas, but if they did could we really do anything with that information anyway?
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