Operation lets mom give son life for second time
20-month-old has rare kidney disorder

Andy Humbles | The Tennessean 

Shafer Daves, a 20-month-old boy with a sunny disposition, needs 11 hours of dialysis per day and must be fed through a tube.

Both of his kidneys were removed last October, the result of a rare condition that has already required four major surgeries.

On Wednesday morning, the little boy, who blows kisses his family calls “sugar pops,” will undergo yet another operation — but this time with a twist and considerable optimism because he will be getting an adult-size kidney from his mom, Jada Daves, 41, a motivational speaker.

“To look at Shafer and be around him, you’d have no idea the critical condition he’s in,” family friend Treva Thompson said.

The Daves family lives in Chattanooga but is renting a home in Nashville just off West End Avenue for Shafer’s care at Monroe Carell Jr. Children’s Hospital at Vanderbilt, where three of the four operations have been done. They expect to be in Nashville about two months.

The operation requires doctors to squeeze the adult’s kidney, about 6 inches long, into Shafer’s lower abdomen. A normal toddler’s kidney is about 2½ inches long.

“This is not elective, this is life-saving. There is some fear. We know the risks and we know there is a small risk of complications. But I am so excited to give my son life,” said Jada, who will give her cheerful little boy a kiss before undergoing her surgery. Shafer will be operated on about an hour later.

Risks for the child include clotting and infections. More than 80 percent of children ages 1-5 who have a kidney transplant in the United States are still using the organ 10 years later.

Shafer’s condition is known as Denys-Drash syndrome, a very rare disorder that is characterized by kidney disease and risk for a kidney cancer known as Wilms’ tumor. No more than 1 percent of youth kidney transplants are done in cases of Denys-Drash syndrome, said Dr. Kathy Jabs, Shafer’s doctor and director of pediatric nephrology at Children’s Hospital.
A perfect match

A huge plus in the mother-to-son transplant is that Jada was a match in all six antigen categories measured by doctors. The best-case scenario is that the mother’s kidney could last late into or through Shafer’s teen years before another transplant is needed.

“The hope is that he can have a normal childhood, with normal schooling, normal activities and normal growth,” Jabs said.

Shafer is the youngest of Kevin and Jada Daves’ five children, who range up to age 9.

“I would love for it to be me, but I’m a 4-out-of-6 match, so it’s a no-brainer for Jada to donate,” said father Kevin Daves, a computer systems programmer. “I’m nervous, but I feel like we’re on the right path.”