My baby was only three days old when he had an open heart operation.

A few minutes into my pregnancy scan, the sonographer told us to go and get a drink and to come back shortly as she couldn’t get a clear view of the heart. I think we knew then that something wasn’t right.


Once we returned we were told that the left side of our baby’s heart hadn’t developed properly and that we were being referred to the Foetal Medicine Unit. Quite honestly we felt like our world had crumbled, I can only describe it as abject despair. We were utterly lost and just felt so helpless.

We had to wait two weeks for an appointment for an actual diagnosis but by this point we knew what they would say. Our baby had Hypoplastic Left Heart Syndrome (HLHS), also known as half a working heart, and we had three options: to terminate the pregnancy, to continue with the pregnancy and let nature take its course or to go ahead with the three stages of surgery. I remember feeling so angry that this was a decision we even had to face but it was a no brainer for us, we wanted to give our baby a chance, after all, he’d got this far.

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