I am the mother of 2 beautiful children, who happen to have congenital heart defects.
My daughter was born on Christmas Eve 2010. Although we knew prenatally that she had a heart defect, nothing prepared us for what we would experience. Within hours of her birth she was transferred to a cardiac intensive care unit in a children’s hospital in another state. She spent her first 66 days of life in the hospital, and by the time we got to bring her home she already had one open heart surgery under her belt. By eight months old she underwent her second open heart surgery, and by 20 months we were told it was time for a third. Luckily, we found a doctor who was able to do a procedure that would buy us time before surgery was needed. Today, at five years old, she is still doing great, although we know surgery is in her future.
In September 2015 I gave birth to our son. All prenatal scans showed a healthy heart and we were thrilled. However at two months old we found out that he, too, was born with two congenital heart defects. Although not as serious and emergent as our daughter’s, they were CHDs nonetheless. Bubble burst.
At this point I am still trying to wrap my brain around the fact that I have TWO children with CHDs. At our son’s last cardiology appointment I had to ask the doctor directly if his heart issues were considered congenital heart defects, even though I knew they were. I needed her to say it out loud. I am sure this is a defense mechanism and my mind doesn’t want it to be true. I am slowly coming to terms with this fact. It is not easy.
To help me process my feelings, I sat down and penned an article about what it’s like to be a “Heart Mom”. I submitted it to The Huffington Post and The Mighty, and both sites published it! You can read my article at the links below.