Prevent Kidney Disease
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The Captain America birthday cake was perfect. The thick chocolate and vanilla center was covered with a generous layer of red, white and blue icing. Last December, as 6-year-old Peter offered the big fat birthday candle to his friend, Izzy, I marveled at how far he had come.
In the early days, after Peter’s transplant at the Children’s Hospital of Pittsburgh in 2006, his liver was healthy but he faced severe developmental delays. After months in the hospital, he didn’t know how to sit up. His stomach was so big he couldn’t crawl. He didn’t understand how to chew or swallow.
The road ahead was steep. And as we fine-tuned his immunosuppressant, I found myself full of fear. Every piece of dirt, every person who wiped their nose, every crowd worried me.
But one day, the clouds cleared and I realized that I might be Peter’s biggest obstacle to a normal life. I had good intentions. I wanted to protect him, but as a family we decided that the best approach was to throw Peter into the deep end.
With that in mind, we sat down with his pre-k teacher who was nervous, but courageous. She didn’t know anyone with a transplant. She had never taught a transplant child before. Our approach seemed risky. Peter might get sick. But we told her that nothing in the future could be harder than the transplant we’d already been through.
For Peter’s teacher, we had one request. Ask the children to wash their hands at the start of every school day. Peter knew to wash his hands when he came into the house, before he ate, frankly whenever he thought of it.
Pretty soon, all the pre-k children were washing their hands. Pretty soon other classes were washing their hands too. And pretty soon, the number of colds and stomach bugs were down at Peter’s elementary school.
Another piece of advice: if your child needs extra help -- get it early. We enrolled Peter in the city’s toddlers with disabilities program. We got him into private occupational therapy rather than wait for a slot on our healthcare plan. We were lucky. We could afford it.
Last November, at Peter’s annual special education assessment, the teachers said he didn’t need their help much longer. Peter was steadily improving and finally in the “average” range. I never thought “average” would sound so good and bring me so much happiness.
Final piece of advice: remember your whole family has gone through a transplant. When Peter was sick, we had to take our “healthy” son Jamie and put his needs on the back burner. I know a lot of families can sympathize. We put everything into saving Peter. We figured we could make it up to Jamie later.
Two years ago, at the National Kidney Foundation Transplant Games, Jamie got the recognition he deserved. Peter and I were scheduled to speak at the living donor event, but Peter had eaten so many potato chips he was in the hotel room with a stomachache. So Jamie, who is just 14 months older, stepped in for his brother.
The auditorium was full. Jamie thanked me for donating part of my liver to Peter. I gave Jamie my medal from the 5k races to thank him for helping his brother. And the crowd gave Jamie a standing ovation. In that moment, I felt that so much weight was lifted from his tiny shoulders. The spotlight was finally on Jamie.
After the event, several families reminded me how important it is to recognize the transplant siblings, so they feel appreciated too.
Last idea: don’t hide the scar. We wanted Peter to be proud of the transplant. How many six year olds can brag that they beat back death at such an early age?
Peter became so comfortable with the idea of transplant that he would offer to show his scar to anyone who was interested. It was liberating to watch Peter lift up his t-shirt and explain how his old liver was broken and the doctors got him a new one. As our friend Larry Hagman would say—the scar is a badge of honor. Why not showcase it?
As I write, Peter is half way through kindergarten and we are looking ahead to Grade 1. Now we worry less about sick days, and we worry more about the color of his Taekwondo belt.
I hope Peter’s good health lasts. I am grateful for the years we’ve had so far. While every child and every case is different, I hope one day Peter will thank us for throwing him into the deep end.
Catherine Herridge is the Chief Intelligence Correspondent for the Fox News Channel based in Washington D.C. She is also the author of “The Next Wave: On the Hunt for al Qaeda's American Recruits.”