2 families share kidneys, hope with each other

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It might be better to give than to receive, but for two Pittsburgh families in need of kidneys, it was both the giving and receiving that created a happy ending.

After Children's Hospital of Pittsburgh of UPMC performed the country's first paired kidney donation involving a child on July 8, the two families met yesterday for the first time at the Lawrenceville hospital.

Bennett Huibregtse, 5, of South Fayette, and Jenny Neely, 37, of Canonsburg, both received kidneys at Children's through the national Paired Donation Network. Bennett's father, Dean Huibregtse, 40, donated his kidney to Ms. Neely, while Ms. Neely's aunt, Ruby Aguilar, 50, gave her kidney to Bennett.

The two families embraced in the sixth-floor atrium of the hospital, asking about each other's recovery and comparing stories about when they received word of the donor match. Several members of both families wiped away tears as they talked about how much better Ms. Neely and Bennett are feeling since the operation.

"I dreamed about this, about someday being able to do this," said Kristin Huibregtse, Bennett's mother. "I can't describe how wonderful it is, being a mom, and having some normalcy in my son's life again."

Both recipients had polycystic kidney disease, a genetic disorder that leads to kidney failure, and had been on dialysis treatments.

Ms. Huibregtse said she has noticed marked changes in her son since he received his new kidney -- he is more energetic and there is more color to his skin, she said. Bennett received a cadaveric kidney when he was 3, but his body rejected it. Ms. Huibregtse said she has much higher hopes for this new kidney because it came from a living donor. Such organs tend to function better than those that come from cadavers.

Ms. Neely recalled the moment when she was told that her aunt was not a match.

"It was really, really depressing," Ms. Neely said. Before the hospital called her to say that they had found a match, she had begun to lose hope that she would ever have a new kidney, she said. All the members of her family at yesterday's news conference wore T-shirts printed with a family photo and the words, "We Are Family."

Paired donations occur when an individual wants to donate an organ to a sick family member, but cannot do so because their blood types do not match. So the potential donor registers with the national Paired Donation Network and agrees to donate an organ to a different person in exchange for a matching organ from that person's family member. UPMC's chapter of the Paired Donation Network, one of a few private registries, has 40 potential donors on the list.

Dr. Ron Shapiro, professor of surgery and head of kidney, pancreas and islet transplantation at the Thomas E. Starzl Transplantation Institute, said it was very lucky for the hospital to find the right match for both Ms. Neely and Bennett within its own database. It was a challenge to find matching kidneys for both patients because of antibodies present in their immune systems.

Ms. Neely and Ms. Aguilar registered in the Paired Donor Network first, waiting several months for a match. As soon as the Huibregtses entered the system, registrars realized that a match could be made and contacted both families two hours later.

"It was like finding a needle in a haystack," Dr. Shapiro said.

Ms. Neely has been discharged from the hospital. Bennett will likely be able to leave today or tomorrow.

Martine Powers can be reached at mpowers@post-gazette.com or 412-263-1308.


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