Anyone get baby prenatally diagnosed with HLHS?

Question

My son was diagnosed with hypoplastic left heart syndrome (HLHS)and I was wondering if anyone has ever had their child have this? Just needing support. It's hard to want to buy things for the baby at all cuz we don't know if he will make it. We have to go to Denver to deliver at children's hospital February 8th and could be there until July if all goes smoothly.

Answer

I had Transposition of the Great Arteries. Hypoplastic LV. VSD. S/P Fontan procedure. S/P bidirectional Glenn shunt. 1st surgery was at 2 days old. 2nd surgery was just before my 2 birthday. I am now almost 30 years old pregnant with my second son. Neither which have my heart.

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Hi! I am the child of HLHS and I am currently pregnant and I am perfectly healthy and I suggest go to the top hospitals like university of Michigan. Please chat me?

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Prayers to you! I'm not familiar with this, but hoping for a good outcome!

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Yes, my unborn was diagnosed with HLHS. We have decided to allow her to pass naturally upon delivery.

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My nephew has HLHS and wasn't diagnosed until after he was born. It's been a long, hard journey and it's not over yet, but he's 4 and doing great!

My sister and brother-in-law kept a detailed blog as they went through treatment.

Www.Judahsheart.com if you'd like to read about it.

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We don't have HLHS but our baby has been diagnosed with VOGM (vein of Galen malformation) and I get how you are feeling about not buying anything just in case they don't make it. I can't bring myself to buy anything for baby either (we already have the important things from our girl who is 15 months old) so we are prepared if she does survive but I don't want to buy anything that will just be a constant reminder that she didn't make it if that's the case.

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Hey Robyn how is your little one? I know it's been a while but just wanted to check up on y'all!

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I lost my son to HLHS. Every case is different, just brace yourself.

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My Izzy was diagnosed with hlhs too.. I'm still not sure how to think about all of this. I'm trying to stay positive.. But I'm so scared.

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I was just told my baby has suspected hypoplasia they said the aorta is narrowing and he will need heart surgery if this is the case,everything I've tried looking up about it takes me to hypoplastic left heart so I'm not sure if it's the same thing? Hope ur baby will be ok, we are 5 months along and have a specialist appointment in 2-3 weeks :(

Anyone get baby prenatally diagnosed with HLHS?

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