Daniel
On December 28, 2005, my husband and I excitedly went in for our first ultrasound on our first child. We were amazed at the beautiful little figure on the screen; I was so taken by it that I wasn’t panicked at all when they said that they were having trouble getting a good picture of the baby’s heart. After several techs and a physician came in for a look, it quickly became apparent that something was wrong. We were sent to our OB who arranged for us to go that afternoon to a perinatologist who confirmed that something was very wrong with our baby’s heart. He recommended an amniocentesis, which stunned us, but we agreed to have it right then and there. He called Children’s National Medical Center and arranged for us to see a cardiologist later that day. It was Dr. Deneen Heath who did a very detailed echo of our child’s heart and delivered the devastating news which would change us forever…our precious unborn child had a complex Congenital Heart Defect called Hypoplastic Left Heart Syndrome. She described our options: comfort care, terminate the pregnancy (unimaginable to us), heart transplant or a series of three palliative open-heart surgeries.
Our choice was clear to us from the beginning; we chose the three-stage palliative surgeries. While completely devastated by the news, we felt very grateful that we knew about his condition and could take all the steps necessary to give him the best start possible.
On May 10, 2006, our beautiful son Daniel was born. I got to hold him for a minute before they took him to start IV’s, give necessary medications, intubate him to protect his airway and assess his condition. Once stabilized, he was transported to CNMC. We had him baptized by our priest on May 14 (my first Mother’s Day). His first surgery, the Norwood, was performed on May 15, his due date. Thanks to the wonderful care he received (from his surgeon, Dr. Richard Jonas and countless others) and through the miracle of God’s healing, Daniel did surprisingly well and was discharged home with us on May 26. We were so thankful to have our son home with us, something we feared might never happen.
Since then, Daniel has endured an emergent cardiac catheterization to place a stent in his Sano shunt (which had clotted off, depriving his lungs of any bloodflow), saving his life. He has survived two further diagnostic cardiac caths and two more open-heart surgeries…all by the time he was 15-months old.
His last surgery was almost two years ago and it has been a wonderfully blessed time! Daniel is in the 90th percentile for weight and 75th percentile for height, has met all of his developmental milestones, loves to read and write and is preparing to start pre-school this Fall. Most importantly, he became a big brother to our second son, Lawrence, who was born with a healthy heart last September.
As difficult as Daniel’s journey has been, we realize that we are among the lucky ones. Our son is alive and healthy; he is enjoying a normal life. We try not to dwell on what the future holds for him as there is so much uncertainty, we focus only on how well he is doing now.
Awareness of Congenital Heart Defects is the first step to increasing funding and research. Our hope is that science will discover what causes CHDs and, more importantly, how to cure them.
We are so thankful to all of those who have cared for, and prayed for, our Champion Daniel. We thank God every day for holding our precious boy in His hands.
Sincerely,
Sally and Nelson Proulx
CarePage: ChampionDaniel