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Does anyone have any experience of having a baby or child with congenital heart disease?

Answered 1 month ago

Please share your experiences. When was it diagnosed? What was the treatment? What have your outcomes been?

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ANSWER
1 month ago
Yes. It was a total medical fuck up - they didn't pick it up when I was pregnant, misdiagnosed it repeatedly & he nearly died at 4 months old. Went in heart failure in the hospital & had open heart surgery. It was a rare one that could be corrected with surgery. All good now. If you haven't already you should connect with heartkids, they were pretty helpful.

REPLY
1 month ago
Can I ask what your child's life is like now? Is it pretty similar to most other kids his age? What has it been like for you? Thank you so much for taking the time to respond.

REPLY
1 month ago
He is fine, the doctors told us he's just like any other kid now but in the next breath they'll tell you to let them know if there's any other changes so you're never completely at ease. Me? i was told there would be a counselor coming around on the ward to talk to me - they never came. It had been mentioned by a family member my husband & myself should have some counseling after but we didn't. We've both been through a bit in our lives so what's another thing at this point. I didn't want to have another child after because I was kinda terrified of it happening again also I'm probably over protective of them now but I think that's a bit natural considering everything.

REPLY
1 month ago
Thank you so much for sharing. It has really helped me. I’m pregnant and have just been given a serious CHD diagnosis and I am pretty overwhelmed. I’m just trying to get an idea of what life may look like after all is said and done.
I wish you and your family the very best of luck and lots of love xxxx

REPLY
28 days ago
I'm sorry, yes that would be overwhelming. You should really contact heartkids they'll be able to connect you with people & share more stories. The process of the hospital, doctor's & even terminology can be really overwhelming if your not used to it would help you greatly to have some prior knowledge. Thank you. I wish you luck, hope & love xxx

ANSWER
1 month ago
I would love to hear more about people’s experiences if they are happy to share?

ANSWER
1 month ago
My sister was born with CHD. She is on a fb support page. Try looking there for advice.

ANSWER
1 month ago
Can't help with that exactly but check out Facebook. There is support groups for almost everything xx

ANSWER
1 month ago
Anyone?