Living with Coarctation of the Aorta, Nicholas

Nicholas’s Story– Written by his mom, Amy

Image collage: Nick as a baby and then playing soccer as a child

Nicholas was born with a critical congenital heart defect (critical CHD) called coarctation of the aorta. Read his inspirational story below about the hardships he faced early in life, but how he is now a poster child for successful heart surgery.

“Are you sitting down? Your baby has a serious heart defect.” This phone call was supposed to be my mother, congratulating us as we brought our baby home for the first time. Instead, it marked the beginning of a whirlwind, which resulted in three hospitals, a helicopter ride and heart surgery, all in the first four days of Nicholas’ life. Nicholas was born with a serious heart defect called critical coarctation of the aorta, a severe narrowing in his aorta cutting off blood flow to the lower half of his body.

The first couple of years of Nick’s life were filled with caution, fear and anxiety, and they were consumed by doctors’ visits. This was compounded by the fact that there were always two other siblings in tow. The inside of my minivan was decorated with the hundreds of “good patient” stickers the three of them had collected. These stickers meant Nicholas had made it another day.

Truthfully, Nicholas is a poster child for successful surgery. He has done so well that the doctors’ visits have tapered off to a bi-annual cardiology visit. He is able to participate in sports with soccer and swimming topping his list, although hip-hop dancing is his favorite. Most days, it’s easy to forget that he has a serious defect. Yet, occasionally, I catch myself wondering what his future holds. Until recently, children with severe heart defects didn’t survive and there is a huge gap of information about adults with heart defects.

There are still questions: How? Why? What’s next? No one really knows. I do know, that I will do everything I can to make sure he lives a long and healthy life.