Historic kidney swap gives Vt. teen his life back

Historic kidney swap gives Vt. teen his life back

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Charlotte, Vermont - December 23, 2010

Just days before Christmas and the Smith family is looking forward to having everyone home for the holiday instead of in the hospital.

"We've had to modify things a few times," mom Nancy said. "Samuel spent Christmas in the hospital one year and Esther had things going on where she was in the hospital last year."

So this Christmas will be particularly special-- and not because of material gifts. In their eyes, there's no gift greater than the three they've already received. You see, half of this brood of six kids-- four of them home on this morning-- was born with a rare recessive kidney disease called familial juvenile nephronophthisis. It was diagnosed in the children just three years ago, all three within a few months of each other.

"The type of kidney disease that my children have is very rare," Nancy explained. "Statistically about one in a million chance of having this and I have three children with it, so that was just mind boggling."

Life as they knew it changed rapidly. First it was Samuel, their only boy, at age 15. Next it was Kate who was diagnosed at age 20, and Esther who was 11 years old when doctors discovered she too had the disease. They all needed a new kidney to survive and after months, even years of dialysis and countless hospital visits, they got them. But it was the last transplant-- just last month-- that proved miraculous. Samuel had had a failed transplant back in 2007 and the introduction of foreign bodies and blood transfusions proved detrimental.

"So he developed antibodies and because what they called 'highly sensitized'-- so he was incompatible with 99.9 percent of the world, so just a tiny percentage of the population would even match with him," Nancy said.

Finding him a kidney proved nearly impossible. All this year, Samuel-- now 17-- was suffering.

"It was really awful having to go in three times a week for hours and hours," Samuel said. "I would feel absolutely awful afterward."

Desperate to find a kidney, the family signed up with the National Kidney Registry; a national group that organizes something relatively new called paired donation. In order to receive a kidney from a live donor you must have a family member or friend willing to give their kidney to someone else in need. It creates a chain and the hope is that these paired donations will help shrink the waiting list by making more organs available. There are thousands of people on the waiting list nationwide. Over 6,000 die every year.

So one day this fall, the phone rang at the Smith home. It was their transplant coordinator.

"She said you know that phone call that we never thought we would get. I think we got it!" Nancy said.

Finally, and miraculously, there was a match for Samuel-- and he, his sister Hannah, who was donating to someone else on his behalf, would become part of the largest kidney swap under one roof in history: 16 pairs, 32 transplants in three days at the Texas Transplant Center in San Antonio.

"The transplant surgeon in Texas said to us after the transplant that for most people waiting for a transplant is like waiting for a train. If you miss this one they'll be another, but in Samuel's case it was more like a comet and you may not see another one in your life time," Nancy said.

"It was really amazing to be a part of that," Samuel said. "So many people who stepped forward to give kidney, a kidney to someone else who they didn't know so that a loved one of theirs could get one. It was really awesome."

That's what Hannah did for him.

"I think it was just because I saw him going through all of this and he really needed one," Hannah said. "He needed it."

It's often called the gift of life, and when this family sees their son and brother smiling again, eating, enjoying life, they know it's true. They've got him back now; back home with a life of anti-rejection drugs, but no dialysis, no hospital stays for now, no more pain. And that's a priceless gift no matter what time of year.

"We absolutely have gotten the best Christmas gift that we could hope for," Nancy said.

For more information on organ donation or the National Kidney Registry which facilitates those paired donations:

National Kidney Registry - www.kidneyregistry.org

Vermont's Online Donor Registry - www.donatelifevt.org

Fletcher Allen Donor Hotline - 877-467-5102

Bridget Barry Caswell - WCAX News

http://www.wcax.com/Global/story.asp?S=13735705