Eight years ago Alison and I sat in a conference room with the Pediatric Heart Transplant Team at Vanderbilt Children’s Hospital. Two days earlier we had heard doctors talking about us going home soon. But then Witt turned blue and was rushed to the ICU and put on life support. Now we were meeting to discuss evaluating Witt as a candidate for heart transplantation. Going into the meeting I was in disbelief that they could perform a heart transplant on a little baby but the team assured us that it could be done and in fact they performed heart transplants on infants regularly. We knew that Witt’s options were very limited and that a heart transplant was likely his only hope and the transplant team confirmed this. So with us in agreement to evaluate Witt for a heart transplant they began to discuss what it means to undergo a heart transplant. They outlined the risks in the transplant surgery, a lifelong increased risk for infection, an increased risk for cancer, the medications he would need to take for the rest of his life, the side effects of those medications, reviewed the 1-year and 5-year survival rates for children that undergo a heart transplant, and discussed the need for another heart transplant in the future. While all of these things weighed heavily on us we agreed to move forward with the transplant evaluation.

Two months old. On life support waiting on a new heart.

Five months later, Witt received a wonderful gift – a healthy new heart. The transplant procedure went smoothly and while the recovery was pretty rocky Witt was able to go home three weeks later. Over the last eight years we’ve watched him grow up and live a surprisingly “normal” healthy life. Sure, he’s been hospitalized several times, takes medications daily, has frequent doctor appointments, and every two years has to undergo a heart catheterization to evaluate the function of his new heart and to look for coronary artery disease (one of the risks associated). But Witt has always taken these in stride and never once complained or questioned why he needed to go through all of this. But recently, with another heart catheterization approaching, I’ve been thinking a lot about what he goes through, the risks he’s been exposed to, and the idea that he’ll need another transplant someday. As these thoughts run through my mind something has troubled me deeply. Lately I’ve thought a lot about “what he doesn’t know”. There is so much about Witt’s future that he’s too young to comprehend. Up until now we’ve not had to explain much about the tests Witt has to undergo or the medications he takes or why he seems to get pneumonia so often. We’ve tried for the most part to keep him blissfully unaware. But Witt is getting older now and he’s asking questions. Just this week I casually mentioned to Witt that he should pack some things for the hospital visit on Friday. Hearing this Witt questioned my previous statement – “wait, I’m just going to the doctor”. We had planned to tell Witt about his heart catheterization the night before but he’s getting older and more perceptive. Which means he will begin to become more aware of what lies ahead. And that weighs heavy on my heart.

But then something amazing happened. Like he had done many times before Witt showed us that you can’t let your circumstances steal your joy. Witt awoke at 4:30am the morning of his heart catheterization happy and without worry. He gathered his favorite things – white bunny, blue bunny, his Champ stuffed animal, his Nintendo DS and happily got dressed. We arrived at Vanderbilt at 6:30am as instructed and began the check in process. Witt happily answered all of the questions from the nurse, the anesthesiologist, and cardiologist. When the cardiologist began to explain what they would be doing he paused for a moment and asked if we would prefer to have this conversation in private – somewhere that Witt wouldn’t overhear what he was about to say. Thinking that he was just explaining the procedure itself I thought that it would be good for Witt to hear. But then he began to discuss the risks associated with the procedure – bleeding, abnormal heart rhythms, blood clots, infection, stroke, heart attack, embolism, and death. With each of these risks I wondered what Witt would say. Would he be scared? Would he still willingly go through the procedure? Would he question why he had to do all of this? Would he say this isn’t fair? His response totally amazed me.

Following the discussion with the cardiologist Witt enthusiastically sampled all of the flavor choices for his anesthesia gas and objectively debated the merits of each flavor before settling on a mixture of cotton candy and skittles. Then he got out of his bed and did the Village People’s YMCA dance for the doctors and nurses. He joyfully played with blue bunny and white bunny. He did all of the things that he would normally do at home. He never once showed any fear. He never complained. He never cried. And when they said that it was time to go back to the cath lab he didn’t hesitate. He hugged us and told us he loved us and calmly walked down the hallway with the anesthesiologist and nurses. Following the procedure the anesthesiologist remarked at how brave Witt had been – that the cath lab can be a little intimidating and scary but Witt walked right in, climbed up on the table, and followed their instructions happily. She said that as the anesthesia gas was administered he fell asleep to “one cotton candy and skittles, two cotton candy and skittles, three….”.

I’m sure I will continue to think about “what he doesn’t know” and it troubles me to think about the fight ahead of him but I know that whatever lies ahead that Witt will approach it joyfully and bravely. And I will continue to be inspired by how he lives his life.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13