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Any one else going through/been through a pregnancy after finding out your baby has CHD (Heart defect)

(3 Posts)
1moretime Fri 17-Jun-16 09:08:12

Iv posted before to say thst at our 20 week scan we found out our baby has an underdeveloped left ventricle - it was confirmed last week thst it is Hypoplastic Left Heart Syndrome 😢 and will require 3 open heart surgery's the first one being in our babys first week of life.
We were given the option to terminate the pregnancy but we have decided to give our little one a chance & will hope & pray he pulls through.
Im currently 22 +2 days pregnant and trying to carry on as normal as I can....altho it is breaking my heart thinking of the unknown.

So I guess I have just started this thread to see if there are any others out there going through or been through the same/similar thing & could share their story's.

Thank you xx

Twoseventhsaweasley Fri 17-Jun-16 19:56:37

I wish you and your lovely baby all the luck in the world with the rest of the pregnancy, birth and the OHS.

My DS1 was diagnosed with CHD at 24 hours old, so I have no experience of knowing during pregnancy. There is a forum called Heartline which is entirely for families of children with CHD. You may find some other families with children with HLHS on there. They are lovely and friendly, and they really understand.

My boy had his first OHS at 4 days. It was very difficult watching our newborn go through all that he did, but in some ways him being so tiny meant that he did not experience the anxiety, fear and confusion that an older child would.

The nurses, surgeons and doctors are amazing. They take fantastic care of babies and explain everything really well.

I hope everything goes as well as it possibly can for you, your baby and the rest of your family.

1moretime Fri 17-Jun-16 21:11:17

Hello Twoseven
Sorry to hear your little one had to go through too hun. I know what you mean about them not really knowing what's going on as they are baby's but I'm terrified & know our little one has to have 3 in order for him to survive.
It's awful trying to act normal & carry on a normal pregnancy. just doesn't seem fair.
We want our little boy to have the best chance possible so know when we hand him over to the docs that he is in safe hands.

Thank you for your reply xx

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