Michael, born 2011

My son, Michael, was born February 15, 2011 with Tetralogy of Fallot and Coarctation of the Aorta.  I found out November 1^st when they did an echo and saw he had a heart defect. Afterwards, I started seeing a cardiologist so they could keep an eye on him and make sure nothing went wrong.   I live in a small town in New York and was induced at Sister’s Hospital in Buffalo, two hours from where I live.

When he was born, he was blue, the cord was around his neck and he wasn't breathing. They put him in the NICU and he stayed there for two weeks. I had to wait for the doctors to talk to other pediatric cardiologist about what to do because of him having both heart defects. They told me if I was to take him home without him having the surgery first he would die. I was not expecting to hear that about my newborn son. At two weeks old, he was moved to Strong Memorial and they did open heart surgery.  

The surgeon was wonderful. He explained everything to me before the surgery. They did a full repair on March 4^th and they told me he did really well and that it didn't look like Michael would need any other surgeries for his heart. He came home the day before he turned a month old. I was scared when he first came home because I didn't know how he would be since my first child didn't have any birth defects.

Now I am fighting to make my son gain weight so he doesn’t have to have a feeding tube. I'm scared that's what it will come down to. He has done at least three different tests to see if there is any other reason for him not gaining the weight. The doctors want to do a procedure where they have to put him to sleep and put a scope down his throat and look at things and take some biopsies to see if they can tell the doctors anything. I hate thinking about the procedure because it brings back the memories of when he was being taking away from me for his open heart surgery.  

Story by Michael’s mom, Laurie – New York