The amnio I had came back clear of chromosomal abnormalities
We had another cardiac scan at 25 weeks, we naively thought it was just to check the things we had seen last time…after the scan they put us back in the quiet room (horrible place), we then got told our baby had Hypoplastic left heart syndrome. It looked border line but would still need surgery as soon as the baby was born. We got told how the baby would need a drug called prostin immediately after birth, this was to keep the ductus arteriosus open until babies first operation. We were taken through the 3 operations to take the heart to a single ventricular function. Which was overwhelming. Our baby was only going to have half a heart. ❤️🩹
However,that was if the baby made it through the rest of the pregnancy and was born well enough to even have the surgery. The surgery itself is only palliative, there is not a cure for this issue. It was at this point we said how we could make the decisions we needed to, to help our baby, but baby would also need to come to the party.
It was complete information overload, learning about it through charities, relaying all this information back to family and close friends was awful for us and them. People didn’t understand and didn’t always know how to respond, especially when you mention the term Congenital Heart disease (CHD) because there is such a high sliding scale of issues encapsulated by this term.
The image shows a ‘normal’ heart by a Hypoplast left heart. With all things the degree and severity of the Hypoplasia (incomplete or underdevelopment) is unique.
Little Hearts MatterHeart LinkKeepthebeatBritish Heart Foundation Tiny Tickers “The Tiny Hearts Charity” Leicester Royal Infirmary East midlands Congenital Heart Centre
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