We all thought he was a very healthy baby, especially since he was over 2 pound heavier than his
Everything seemed idealic at first. Matt seemed to sleep really well. Sometimes I even had to wake him up to eat. (That was a first!) As the days went on I started thinking that this was too good to be true. When he was
Dr. Chris Leumas, our WONDERFUL pediatrician, began to examine Matt. I noticed that he was spending a long time listening to Matt's heart. However, both of my other children had innocent heart murmurs when they were born, so that didn't overly concern me. Dr. Leumas then said he heard a murmur in Matt's heart and that it DIDN'T sound innocent. He thought the murmur should be checked out right away by the pediatric cardiologist and so left the room to call and get me in that morning. He told me that they would work me in and brought me the phone to call my husband. Now I was starting to worry!
I drove Matt to the cardiologist's office where my mother met me. We then met our new physician, Dr. Les Hixon. After they did an EKG, Dr. Hixon did an echocardiogram (ultrasound of the heart). It didn't take him very long to turn off the machine and tell me that Matt had a very serious heart defect. I was crushed! He then told me we would walk over to the hospital, admit him into the PICU, stabilize him (Now, THAT was very scary to hear!), and would talk as we walked. I'm sure that is when he began telling me about Hypoplastic Left Heart Syndrome, but that is the one part of this day that I don't recall very well!
Matt was immediately medicated with prostaglandin to keep a certain duct in his heart from closing. This duct usually closes within a few days after birth. Matt was now 10 days old. The duct staying open was the only thing that kept him alive. (We thank God everyday that Matt survived!) He was also put on a ventilator, had several IV lines started, and was sedated. He was so still and had so many tubes and wires attached to him that it was hard to believe it was my baby boy lying there!
After another lengthier echo, Dr. Hixon informed us all about Hypoplastic Left Heart Syndrome. Basically, the left ventricle which pumps the oxygenated blood to the body was very tiny and nonfunctional. Without intervention this disease is fatal. (As an aside, when Dr. Hixon began explaining this to us, I recall seeing numerous people in white coats behind the desk listening intently. They must have been interns, residents and such coming to see this rare defect. I remember thinking it was ironic my baby was a teaching tool, but the teacher in me really hoped they learned something!) We were then told of the 3 basic choices: compassionate care (go home, do nothing and let the baby die), transplant, or a 3 stage surgery called the Norwood Procedure, which "rewires" the heart to function with 3 chambers. The surgeries immediately seemed best to us. Dr. Hixon then recommended we travel to a hospital in Delaware that specializes in these surgeries and where we would have Dr. Norwood himself as our surgeon. (We will forever be grateful to Dr. Hixon because he saw to it that our insurance would allow us to travel where Matt would receive the best possible care and for the excellent care he continues to provided for Matt.)
