Becoming a Mum of a Child with Ebstein’s Anomaly and Double Orifice Mitral Valve

I gave birth to a handsome, long and healthy looking baby boy, he had bright blue eyes and a small amount of blonde hair. He was the son we had been waiting 9 months to meet, all the scans came back good and he looked a picture of health but there where a few signs as time went on.

During the first week he had trouble breastfeeding, during the second week he became irritable and started vomiting. Then by 6 weeks he started to seem bluish and tired. At this time we took him to the hospital then the pediatrician they said he definitely had reflux however he also heard additional heart sounds, two weeks later we went to the Cardiologist and our beautiful boy was diagnosed with Severe ebstein’s anomaly and double orifice mitral valve.

All I could hear where a bunch of words which made no sense. I asked, “okay, what does that mean?”

He made a rough drawing to explain the difference between Bastien’s heart and a healthy heart. We where shocked and devastated, we went home and of course we began Googling things. Words like “high rate of infant mortality,” “short life expectancy,” and “unfavourable outcomes” filled the screen and from then on we have been uncertain exactly what the future holds for our son.

Thankfully most of the literature is ten years out of date and due to recent surgical and medication advances children like our son can now expect to live to 40 or 50. Our son is now 18 months old and doing okay, he has constant issues with the flu, low oxygen levels and seems to have a speech delay but considering the literature, he has come further then we ever thought. He is on daily medications and will need multiple surgeries and medications in the future but we are just happy he’s alive. We love you, Bastien!