This is Witt’s story written by his father, Norm. Thank you Deane family for sharing this with us!
Witt just hours after his transplant. He was not doing well and required chest compressions twice in the hours following his transplant.
Five years ago, in one of the darkest and most hopeless times in my life, God called out to me. My wife, Alison, had just given birth to our third child – our first baby boy. Within hours of his birth Witt was diagnosed with a Congenital Heart Defect (CHD) called Aortic Stenosis. Initially the doctors were optimistic that Witt’s heart function could be improved with medications for now, and then surgery as he got older. But at two months old while he lay in the pediatric intensive care unit, Witt’s heart grew sicker and the doctors told us that his only hope was with a life saving heart transplant. For the first time in my life I felt absolutely helpless. There was nothing that I or anyone could do to heal Witt. His heart would slowly and gradually begin to fail him and all we could do was watch and wait – wait for him to slowly fade from this world, or for a horrific tragedy to strike some other family so that he might receive a new heart. Alison and I were devastated and fell into a deep and dark despair.
We were in absolute shock. We had never heard of a child (much less an infant) undergoing a heart transplant. We didn’t even think it was possible. Even when we had accepted that it was possible we were overwhelmed with fears that the transplant was too risky. For about a week we were lost in despair and hopelessness. But in the midst of this darkness and despair God began to call out to me. I’m not talking about a voice in the burning bush kind of thing. He began to speak to me through many of the people in our church who visited us in the ICU on a daily basis. They visited us on days when we were lost in despair and hopelessness and told us of God’s faithfulness, his love, and his mercy.
It was extremely difficult waiting in the hospital for a heart to become available for Witt. I can remember meeting the little boy in the room beside us in the PICU. He had been waiting on his new heart for almost six months. I told our nurse that we would never make it that long. My wife, Alison, and I had two other children at home (Ellery – 15 months at the time and Riley – 13 years) and it was really hard being there with Witt and trying to be there for our girls as well. But for six months one of us stayed at Vanderbilt with Witt while the other stayed at home with the girls. Every day we switched out. The wait wore us down physically and emotionally. We knew the statistics that 21 people die each die across the country while waiting on an organ transplant. Our biggest challenge was to keep Witt healthy because any illness would remove him from the waiting list.
After months of waiting, I was laying in Witt’s room half asleep when the phone rang. I picked it up and it was Dr. Dodd (Director of the Pediatric Heart Transplant Program). She was calling to tell us that Witt would go to the OR for his transplant early the next morning. All night we prepared Witt for his transplant. Then about 4:30am Dr. Dodd called again but this time she was calling to tell us that they needed to call off the transplant. They had found a virus in the donor that could kill Witt if they went ahead with the transplant. During the six months that we waited we hit rock bottom – emotionally and physically – many times. It was one of the most difficult things I’ve ever been through.
When we found out Witt would finally receive a heart we were hit with this emotional burst of joy, relief, worry, sadness, and fear. We were relieved that Witt would have a chance at going home, but there was also a sense of worry and fear. We realized that in a few hours they would be removing Witt’s heart and replacing it with a precious, but cold and lifeless, new one in hopes that it would beat again. Then in that same moment, there is the knowledge that somewhere else a family stood by their child saying goodbye. It was a long worrisome night, but by morning we received news that Witt’s new heart was in and beating. The days following his transplant were tough. The image of the doctors urgently performing chest compressions on Witt will always haunt me. But by the third day Witt’s recovery took off and three weeks later we got to take him home.
Witt has a lifelong fight ahead but his prognosis is very good. He will always need to take anti-rejection medications to prevent his body from rejecting his new heart. He has to have a heart cath and biopsy at least every two years to check for rejection and coronary artery disease. And at some point he will likely need another heart transplant, but for now his life is pretty normal. Witt goes to school, plays soccer and baseball, and has more energy than anyone I’ve ever met.
Children listed for heart transplant have the highest mortality rate while waiting out of all organ transplants. There are not enough donor hearts available for all of these sick children. But what if a custom heart could be made for a child when they need it? Research is currently underway to “grow” hearts using a recipient’s own cells. Crazy, right?! We want to fund research to further life-saving methods for children with CHD including children who need a heart transplant. Help us and learn more here at our website: www.projectheart.org/donate