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Old 07-22-2009, 02:16 PM   #1
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angelsabove HB User
lost baby at 22 weeks from HLHS

I lost my baby at 22 weeks as he was diagnosed with Hypoplatic Left Heart Syndrome. I'm wondering if anyone else out there has had the same experience and if you've gone on to have any healthy children after that baby. My husband and I are anxious to try again and have another baby, as our only child at this time is 5 years old. We've waited a long time to add to our family, and are worried that we will be faced with the same diagnosis again.
Any feedback would be so wonderful, thank you!

 
Old 07-31-2009, 12:29 PM   #2
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Re: lost baby at 22 weeks from HLHS

I had a child in 2001 that had hypoplastic left heart syndrome. He only lived 7 days. He went through the first surgery and did not do well afterwards. I did have a baby 2 years after that and she is now 6 and healthy as can be. I was told that I would have just a slight chance of having a baby with hypoplastic left heart syndrome in the future. Good luck and take care.

 
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Old 09-16-2009, 05:02 PM   #3
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Re: lost baby at 22 weeks from HLHS

Hi, my son had HLHS (as well as a hypoplastic right lung, and vein atresia - missing the vein that normally routes oxygenated blood back to the heart - but we didn't know about these lung and vein problems until well-after he was born, well after his first heart surgeries) and died at almost four months old after never being able to ever leave the hospital.

We were told that (because we'd had all the genetic testing done, and it wasn't a genetic anomaly that we know of) that we have a 92% chance of our future children being completely heart-healthy. The normal risk in a general population for any pregnancy for ANY congenital heart defect (CHD) is 4% - and because of our son - our risk for any CHD in future children goes up to 8%.

I am currently expecting, but I am only 13 weeks along. We've been able to see that our baby has a heart, a heartbeat - but it will be just a few more weeks before we'll be able to get a fetal echocardiogram to see if this baby has any major structural things wrong with the heart. I need to know soon. I know of several people who've gone on to have completely normal babies after one with HLHS, so I am really hopeful that all is going well with my little one inside (who was moving a lot in the ultrasound yesterday).

 
Old 09-17-2009, 08:44 AM   #4
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angelsabove HB User
Re: lost baby at 22 weeks from HLHS

I want to thank everyone for their responses, it really helps to hear that other women have been through this and are still going on to have healthy children. We know that trying for another baby means a 5% chance of a repeat CHD situation, but have our fingers crossed the next baby will be okay. We wanted to go for genetic testing, but they told me that the gene that carries this defect is not traceable so it wouldn't help us. We are currently waiting for the results of our baby's autopsy, to see if we can learn anything from that. I keep telling myself that we have a 5 year old son who is completely healthy, so if our same genes that produced our sick baby produced our healthy 5 year old, then it's possible for other children to be conceived healthy too. That's what I'm hanging onto.
Hearing other people having healthy babies out there after babies with HLHS, makes me a little more relaxed about it since it's such a rare thing that there isn't a whole lot of info on.

Thank you to all for your comforting comments. I wish you well storm12 with your pregnancy and I can feel your anxiety about it, waiting sucks since it's such a long wait at that. Good luck and best wishes for a healthy baby, my thoughts are with you :-)

 
Old 09-18-2009, 07:20 PM   #5
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Re: lost baby at 22 weeks from HLHS

I forgot to mention that I do have an older son. He is 16 years old. My son with HLHS would be 8 years old now and then I have my daughter who is 6. I will be thinking of you and praying for you and your family. Good luck. * email address removed by hb-mod, moderator * It has been 8 years since I lost Zachary and time helps ease the pain of it all somewhat. I know he was born for a reason and some day I will understand it all. Take care and god bless.

Audra

Last edited by hb-mod; 09-18-2009 at 11:33 PM. Reason: Please don't post your email address, per Posting Policy.

 
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