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Coarctation of Aorta - please help :(

(3 Posts)
moomin90 Wed 27-Sep-17 21:10:39

Hello Everyone,

We have just found out at our 20 weeks scan that our child will be born with Coarctation of the aorta, which is a congenital heart defect.
This came to us as an utter shock as we have no family history etc.
We are concerned with a number of things. The view of an open heart operation straight after birth, and if any other defects can be discovered post birth that are not visible on the scan at present as it is very early in the pregnancy?
What does it mean living with CoA. Does it have an impact on your life and doing sports at school? Is another operation (or few subsequent) always needed? Do children with CoA get ill more as their immune system is not as strong?
Any experience of a parent of a child or an adult that had it 'fixed' here in the UK would be most appreciated. We have been referred to Royal Brompton Hospital for the operation after birth. Thank you so much for all answers. We are worried sick sad

Mac12345 Tue 07-Nov-17 20:05:30

Sorry I'm replying to this a month later, i hipe you're feeling a bit less overwhelmed now, it's such a hard diagnosis to hear. I wanted to send some reassurance your way. My baby was diagnosed at 20 weeks during the scan. He had his operation at 3 days old and was really tiny, 2.5kg. He was absolutely fine, recovered really quickly. Please don't worry, the surgeons are fantastic and the risk is low. I imagine if there are extra heart defects they'll be picked up on future scans as your little one gets bigger, but obviously I don't know that for sure! He needed an extra procedure when he was 6 months old and needs another now at 1 year. That doesn't mean your baby will need more than one op, so please don't worry about it!!

I'm afraid I have nothing to offer on life at school doing sports and things. I worry about that too. Weirdly the thing that plays on my mind the most is will he be able to go on rollercoasters.

Where will your baby be having his op? Ours had his at Newcastle and the staff were incredible. They are so good at what they do and are brilliant. I never once feared for him during or after the op.

I hope I've helped a little. If I'm not too late and you're still around please feel free to ask me anything else, or dm me if you want! Hugs to you.

CosySnuggles Fri 17-Nov-17 21:27:24

Hi @moomin90

I know this is bit late, but just come across your post and thought I could help.

I was born with Coarctation of aorta, corrected as a baby and now a happy and very healthy 30 something smile

Please feel free to ask me any question you have, I’d be more than happy to share my experiences.

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