In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today we’ll hear from Daniel’s mom, Mary.
My name is Mary Adair and I live in San Antonio. I would like to share about my youngest child, Daniel. Daniel is an inquisitive 10-year-old boy who has had to endure more than any child should. He was born full-term on Nov. 12, 2006, at Methodist Children’s Hospital of South Texas.
I was so excited to see my sweet boy, but in the middle of my excitement I said “he’s blue.” The nurse tried to tell me that sometimes babies look a little different. But, a mother knows. Daniel was born with Tetralogy of Fallot with Pulmonary Artery Artresia with a VSD (PA-VSD). I had never known anyone or even thought of my child being born with a congenital heart defect. Thus, began our new normal.
Later that evening, we met Dr. John Brownlee. This wonderful man and amazing doctor took the time to tell us, two wide-eyed, scared to death parents, that Daniel was born without a valve, he was very sick and would need his first surgery as soon as possible. The words “first” and “surgery” were ringing in my ears.
Daniel had his first open-heart surgery at the tender age of 3-days-old. His cardiac cauterization went horribly wrong, and an emergency bypass surgery had to be done. Dr. John Kuperschmid with Methodist Hospital became our second new best friend. While in the hospital for another four weeks, Daniel would take two steps forward and three steps back. We finally made it home to enjoy our sweet boy, only to return when Daniel was three months old for surgery number two.
Once again my son’s amazing heart team — Dr. Brownlee and Dr. Kuperschmid — came together to form a plan. My son went on to have eight years without any surgeries. We followed every bit of advice his doctors offered. However, at the age of eight I noticed that once again Daniel was turning blue. He had a difficult time keeping up with his friends. I had to start carrying him everywhere as he was unable to take five steps without telling me how tired he was. This was when his doctors said “it’s time.”
We went back to Methodist Hospital for his third open-heart surgery. This time I was prepared. I was not the terrified mom like before — I was my child’s advocate. Dr. Kuperschmid was at our side, along with Dr. Guerrero who has been my son’s anesthesiologist since day one. Dr. Brownlee, who moved three hours down the road, was still only a phone call away. The consistency in his medical team was key to feeling secure in my child’s care. The education I was empowered with made a difference. My son, who was scared during his four days in the hospital, was comforted by the fact that his doctors cared and knew him well.
Today, Daniel’s a happy, energetic little boy. He plays basketball and soccer and loves to watch football. What my son’s heart lacked in structure, his personality more than made up for.