Ari, born 2009

Our son, Ari, was diagnosed with a congenital heart defect at the 20-week sonogram. At his first fetal echocardiogram, we found out that he had aortic stenosis, and at that time it was thought that the condition was mild. However, at a follow-up echocardiogram at 27 weeks, it was discovered that the aortic stenosis was severe and was affecting the size and function of Ari's left ventricle, and that he was developing hypoplastic left heart syndrome.

 

We were referred to Children's Hospital Boston for a fetal intervention procedure whereby the aortic valve was ballooned while in utero, in order to relieve the pressure on the left ventricle, at 29 weeks. The procedure had risks and no guarantee of success, but we felt that it was the best option for us. After the procedure, we went back home, but decided to have the birth take place in Boston, so that Ari could be treated there after birth.

 

Ari was born at 39 weeks at Children's Hospital Boston, where we temporarily relocated. His aortic valve was ballooned again on the day of his birth; however, after the procedure the aortic valve was leaking and caused many problems. A few weeks later, it was decided that he needed to have open heart surgery, so he had the Ross procedure, where his pulmonary valve was put in the place of his aortic valve, and his aortic valve was discarded. A homograft was used where the pulmonary valve used to be. Ari recovered well from the surgery, although he initially had some eating and breathing problems. Over five weeks after Ari was born, we were finally able to take him home from the hospital.

 

Today, Ari is a healthy, chunky, spirited 8 month old baby. We are grateful to say that the left side of his heart is functioning well. He will have to have at least one more surgery to replace the homograft as he grows.

 

Story by Ari's mom, Sara - NEW YORK