Children learn to manage their health care for life

SALT LAKE CITY — When Devon Galland heads to college next fall, he'll take household items his mom said he could borrow and the kidney she gave him outright.

But while the organ is his now, Jodie Galland has for a very long time taken care of it, from managing the anti-rejection drug schedule and the needed doctor appointments to keep it healthy post-transplant to enforcing the dos and don'ts of eating and exercise.

Devon, 18, is training to take over those tasks. So is his younger brother, Ethan, 13, who also has a transplant. Both are part of a special program by the kidney transplant team at Primary Children's Medical Center called "Movin' On Up." The goal is not only to help kids like Devon and Ethan learn about their own care so each can eventually take charge, but to help moms and dads get used to letting go.

"This is really for patients AND their parents," says Stacy Taggart, kidney transplant coordinator. "Parents have a hard time letting go of the care of kids. And we want kids to have the opportunity to learn these skills before they are forced to."

Transitioning kids with chronic medical issues to adult care settings and self-managementis a hot topic. At Primary, the liver and heart transplant teams are creating similar programs. Taggart expects eventually to see it in other areas, such as perhaps diabetes care.

The two boys, the second and fourth of Gary and Jodie Galland's five sons, were born with nephrotic syndrome, which produces a group of symptoms that ultimately damage the kidney. Astonishingly, Gary was able to donate his kidney to son Ethan, while Jodie was a suitable match for Devon. It turned out in testing that the dad could have provided a kidney to either son, but mom couldn't help Ethan. Only later did they realize how high the odds were stacked against both parents being suitable donors, Jodie Galland said.

Devon got his kidney first, in January of 2004. Ethan was transplanted in March of 2005. And again remarkably, neither boy has experienced a single "rejection" episode with the donor organ. Part of that is the exquisite care their parents have taken in making sure they get their medications on time, among other factors. But while Ethan has a little more time with their oversight, Devon's going to be on his own starting in the fall, when he plans to study for a semester at Utah Valley University before going on an LDS mission.