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HLHS, cleft lip, and more

I'm 23 weeks. I found out yesterday my baby girl will be born with cleft lip (they weren't sure about palate yet and may not know til birth) and hypoplastic left heart syndrome (a serious heart condition that requires surgery or transplant for any chance of survival). This is only the tip of the iceberg- they're also concerned about her growth and believe all her problems may be caused by a chromosomal abnormality. So I'm getting an amniocentesis ASAP to look at the genetics. We have a heart scan next fri.

I guess my main questions at this point (besides how am I going to get through this) are:
1) anyone else with these issues?
2) did it turn out not to be a chromosomal thing?
3) if it was chromosomes, which numbers were affected?
4) what was/is the outcome/prognosis for your baby currently?

Thank you

Re: HLHS, cleft lip, and more

  • Thank you so so so much, this actually helps answer more than 1 question I had and makes me feel a lot less alone in this. I can't believe your amnio came back normal- I'm so glad that it did but it really does sound like chromosomal based on what I've read. I'd be very interested to hear what they find after birth. Praying it's all just random non-related issues that they can resolve one at a time! Thanks again, this is very helpful before my amnio and fetal echo which are both tomorrow.
    Just thought of something else: did they run a microarray with your amnio? Is that what came back normal?

    Thanks @jmar2011‌ !
  • Also how small was the small growth? My baby is about 10 days behind but they aren't sure if it's actually an issue or not at this point. @jmar2011‌
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  • I do not have the same issues as you guys but I dealt with a large heart defect (ToF). After an amnio we discovered he had Down syndrome.

    I would highly recommend that you join the Facebook group Heart mamas. It's frequented by a lot of moms of children with HLHS. I'm sorry for everything you are going through but I'm sure it will help to meet other parents in similar situations.

    If you have trouble finding the group PM me and I can help you.
    [Deleted User]
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