Hypoplastic Right Heart Syndrome: Pulmonary/Tricuspid Atresia
DOB-July 25, 2003
Madison Ann Spangler was born on July 25, 2003 at Carolina’s Medical Center in Charlotte. She was diagnosed with hypoplastic right heart –pulmonary/tricuspid atresia when I was 5 months pregnant. We were very scared about what would happen to our little girl. She had the BT shunt at a week old, the Glenn procedure at 6 months, and the Fontan at 3 years old in November of 2006. Her longest stay in the hospital was about 2 weeks. She did have a set-back immediately after her Glenn procedure. She began bleeding internally. She had apparently started moving around too soon and dislodged a suture. Dr. Watt’s immediately took her back to surgery and fixed it. She has blown us all away! To say that she is full of life is would be an understatement.
She is a typical 5 year old now. She loves to play outside, dance and sing. She has even started playing soccer. Although, I do notice a difference in her energy level compared to other children. She doesn’t run as fast and gets tired easier. But she loves it, and still has a great time. Dr. Bensky told us to give her a normal life, and her body would let her know when to slow down. So far, so good. Most people are shocked to find out that she even has a heart defect. It hasn’t always been easy. The Fontan was the hardest for her to get over emotionally. We dealt with nightmares and some depression. She was scared of strangers and especially doctors for a while. But after a few months it all faded away. She is currently on Enalapril twice a day, and also 81 mg aspirin once a day. We consider ourselves very lucky that is all she is on. We only have to see her cardiologist once a year now. Which was a little scary at first. I wanted to see him once a month. But, Dr. Bensky assured us she is fine. I thank God everyday for leading us to Carolina’s Medical Center and the team at the Sanger Clinic.
We could not have asked for better care from the surgeons, cardiologists, CVRU nurses, and receptionist in the waiting room. Everyone worked to not only make Madison comfortable, but to give us peace of mind. It was hard to leave Madison in the CVRU, and not see her much. But we knew that she was getting the best care, and we were always updated on her condition. What I want people to get out of Madison’s story is that CHD is no longer a death sentence thanks to medical technology. For all intents and purposes Madison is a typical little girl that wants to be a princess when she grows up. The only thing ahead of us for now is a heart catheter. Dr. Watts told us to expect a need for a transplant 20-30 years down the road. We take it one day at a time, and let her live life to the fullest.
We also have a 2 year old son, Will, that has a healthy heart. I would love to hear from anyone that has gone, or is going through this process. We’ve been where you are, and it’s a tough place, but know that there is light at the end of the tunnel.