PALO ALTO, Calif. -- As dramatic transformations go, it’s hard to match the aftermath of a sick child’s kidney transplant. Freed from dialysis and the side effects of kidney failure, young kidney recipients experience bursts of growth, discover new reservoirs of energy and achieve developmental milestones.
In 2012, caregivers at Lucile Packard Children’s Hospital enabled this exciting process dozens of times: They performed 31 kidney transplants in kids under age 18, more than any other pediatric transplant program in the nation. That’s according to newly released data from the United Network for Organ Sharing, the private, non-profit organization that manages the nation’s organ transplant system.
“We have very high success rates with difficult-to-transplant children, those who are too small or too sick to be treated in other places,” said Packard Children’s pediatric nephrologist Paul Grimm, MD, the kidney transplant program’s medical director. “We want all of these kids to have the best possible chance for a normal life.”
The team’s success with very sick kids is due to a multipronged approach that surmounts many obstacles to transplant. The work begins long before the day of surgery, continues for years afterward, and draws on a diverse array of experts, including physicians and surgeons, nurse coordinators, nurse practitioners, physician assistants, nutritionists, child-life specialists, social workers and psychologists. “We have a fantastic, dedicated team of people who live and breathe transplant,” Grimm said.
One common barrier to transplant — the small size of the youngest patients — was doubly troubling for the Graham family of Houston. Twins Addie and Max Graham, now age 2, were born in 2010 with a severe kidney disease called congenital nephrotic syndrome. Before transplant, they endured 14 to 20 hours of dialysis per day. Their parents, Al and Stephanie, worried they wouldn’t survive to reach the 33-pound size often considered the lower threshold for kidney transplant. Then the Grahams learned that the Packard Children’s team can transplant kids as small as 22 pounds, thanks to the team’s special surgical expertise.
"Al and I were so relieved to find Packard Children's," said Stephanie, who donated one of her kidneys to Addie in May 2012. Al gave a kidney to Max in December.
Packard Children’s combined emphasis on excellent medical care and family-friendliness was especially important for the Grahams, since they were traveling thousands of miles for transplants that involved all four members of their family. Transplant coordinator Gerri James, RN, ensures that patients’ families are connected to all the resources they need, from local housing to answers to their many questions.
“It’s super-important for families to know that there’s somebody there that is on their side,” James said.
Addie and Max also benefited from several improvements in care that the Packard Children’s team has instituted to help small patients. Before transplant, the twins received optimal nutrition to help them grow as strong as possible in preparation for their surgeries, and had dialysis treatments from nurses who specialize in giving dialysis to infants and small children. After transplant, caregivers carefully monitored their fluid levels and blood pressures to make sure that the adult-sized kidneys they received from their parents would function correctly.
“One thing that makes our smallest patients do so well is that we try to get the biggest, healthiest kidney possible into their little bodies,” Grimm said.
Based on decades of pioneering Packard Children’s research, Addie and Max are also receiving a regimen of immune-suppressing drugs that avoids steroids, which were once considered essential but stunt children’s growth. Steroid-free immune suppression is now standard for all of Packard Children’s kidney recipients. Nationwide, about half the kids who receive kidney transplants now receive steroid-free medication for immune suppression.
In addition to helping first-time kidney recipients, such as Addie and Max, the Packard Children’s team has special expertise in performing second transplants for children whose bodies have rejected the first one. “These children are often considered un-transplantable by their local transplant centers because their immune systems are so hyperactive, and they can languish on dialysis,” Grimm said. Unlike many other transplant programs, Packard Children’s can offer medication to lower the body’s sensitivity to transplanted tissue, he added. “Our desensitization program can allow us to transplant them and help them return to more normal lives.”
For the transplant team, the best part of their jobs is watching patients’ development after they receive new kidneys.
“They thrive,” James said. “They become like every other kid at the playground. You really make a difference in their lives. Nothing else can come even close to that feeling.”