Autumn 2008

How to Save a Life

Children thrive thanks to the expertise of Emory transplant surgeons—and to family members willing to give a part of themselves

By Mary J. Loftus

Tod Ellison dreams of drinking Coca-Cola. Even in his dreams, he knows he’s not supposed to have the ice-cold drink, but he really misses it. He used to drink three or four a day. “I really wanted one at the Varsity,” he tells his nine-year-old son, Trevor, who is sitting beside him on the couch. “Then I even had a dream that I was drinking a Coke.”

Trevor giggles, and Tod tickles him to keep the giggle going.

Soon enough, Trevor is off, playing Mario Party 8 on his Wii, collecting cicadas in a Sponge Bob lunch box filled with twigs and leaves, and splashing around in the lagoon-shaped pool in the backyard of their Peachtree City home with his younger sister, Morgan.

And Tod is left pondering the miracle that led to his current state of soft-drink deprivation: his son needed a new kidney, and Tod was able to give him one. A father-to-son gift, no paybacks, not even a second thought. “Any parent would do it,” Tod says.

And if in the evaluation process, he discovered that he was prone to kidney stones—had several stones already, as a matter of fact—and had to give up dark sodas and sweet tea, well, so be it. “They gave me every medical test they had, I think,” Tod says about the nine months of poking and prodding at Emory’s clinic that led to his approval as a donor.

For Trevor, who was born with damaged kidneys, a transplant from a related donor was his best chance at a normal, healthy life.

The Emory Transplant Center and Children’s Healthcare of Atlanta perform between thirty-five and forty kidney transplants on children per year, ranking among the top four pediatric kidney transplant programs in the country. Donor transplants from close relatives are the gold standard, since the kidney will likely last decades.

“My most emotional moment was when I found out I could actually be the donor,” Tod says. “After that, everything just fell into place. I never worried about my health or my condition.”

Not only was Tod the same blood type as his son, his kidney was a near-perfect match. “My worry went from way up here,” Tod says, lifting his hand up and then swooping it lower, “to way down here.”

Trevor was born with reflux nephropathy, a disease in which the kidneys are small and scarred due to flawed valves that allow urine to flow backward. His parents, Tod and Beverly, knew that a kidney transplant was in his future, but they wanted to hold off as long as possible. When Trevor’s energy started to wane last year, though, they looked into his best options. Kidneys don’t regenerate, and Trevor’s were too damaged to keep his body functioning well. He was weak, had no appetite, and his legs were constantly bruised from anemia. The time had come for either dialysis or a kidney transplant.

Tod’s test results cemented the decision, and they wasted no time in scheduling the surgery: Tod was prepped on June 20 at 6:00 a.m. at Emory Hospital; Trevor was prepped at 11:00 a.m. at Children’s Healthcare. The transplant team wheeled the kidney across Clifton Road in a blue insulated picnic cooler.

“That morning, I had a good friend come to stay with Trevor while I walked with Tod to Emory Hospital, and then I went back over to Children’s to stay with Trevor,” says Beverly, who works at Delta. “It’s hard when you really want to be in two places at once.”

Just five weeks after the surgery, Tod was back at his job at MEI Corporation and even playing golf again, and Trevor was able to start third grade with his regular class at Crabapple Lane Elementary.

Living-donor transplants offer many advantages over transplants from deceased donors—including the ability to schedule the surgery in advance, with the donor nearby. This means the kidney stays on ice for minutes instead of hours, and increases the likelihood of immediate functioning and long-term success.

Related donors—parents, siblings over eighteen, even distant relatives—tend to be better matches, both in blood type and human leukocyte antigen (HLA), often referred to as the “tissue match.”

With an HLA-identical, living-donor kidney, as Tod’s was for Trevor, half will function for more than 26.5 years after the transplant. This compares to 10.9 years for a non-HLA identical, unrelated, deceased donor kidney.

In addition, there is a shortage of donors: seventy thousand people are on the United Network for Organ Sharing (UNOS) list for a new kidney, and thousands will die while waiting.

Even a successful transplant is not the final step for children like Trevor, however. They must visit the Children’s Healthcare transplant clinic regularly for monitoring and stay on a strict regimen of immunosuppressant drugs to prevent tissue rejection.

These drugs have multiple side effects, including, ironically, kidney disease, as well as an increased incidence of heart disease, diabetes, high blood pressure, and other ailments. This can be especially hard on children because of the decades they must be on the immunosuppressant drugs.

Also, most of the drugs were designed for adults and have been adapted for children only by adjusting for weight. “But the immune system doesn’t grow in parallel to a child’s weight,” says Georgia Research Alliance Eminent Scholar Allan Kirk, scientific director of the Emory Transplant Center. “The result is that children are often over-immunosuppressed.”

Kirk is leading a study with Emory’s School of Medicine, Children’s Healthcare, and two university hospitals in California—UCLA’s Mattel Children’s Hospital in Los Angeles and Lucile Packard Children’s Hospital at Stanford—to find new ways to make kidney transplants and the follow-up therapy more tolerable for children.

The National Institutes of Health awarded the medical centers a five-year grant, totaling about $6 million, for the Clinical Trials in Organ Transplantation in Children program.

As children mature and are gradually exposed to environmental stresses such as viruses, the set of T cells (white blood cells) in their bodies able to respond to infections and foreign bodies changes. Part of the study will catalog and define how pediatric kidney surgery transplant patients’ T cells evolve as they get older, with the goal being to tailor therapy to individual children at different points in their immune system’s evolution.

“The good news is that outcomes in kidney transplantation have become much more successful in the last couple of decades,” says Barry Warshaw, chief of pediatric nephrology at Children’s Healthcare of Atlanta and associate professor of pediatrics at Emory. “The bad news is that kidney transplants still don’t last a lifetime.”

Seven-year-old Jalen Fields is too busy living in the moment to be concerned about that.

Racing through the Austell apartment he shares with his mother, Rashida LaVette, and brothers Roy, Kevin, and Nicholas, he barely pauses to greet his grandmother before barreling over the back of the couch and down the hallway.

“This is the way he’s been since the surgery,” says Karen “Nita” Williams, Jalen’s transplant donor, who smiles broadly as she watches her grandson play.

Jalen was born with polycystic kidney disease, a genetic disorder that causes multiple cysts in the kidneys. The pressure in Jalen’s kidneys was so great, he went on dialysis at three and a half weeks of age. At first he had peritoneal dialysis, in which the network of blood vessels in his abdominal cavity was used to filter the blood, then he was switched over to hemodialysis, where the blood is cleaned outside the body three times a week.

At the time, Rashida was working as a medical assistant at a doctor’s office and was pregnant with her youngest child, but devoted herself fully to Jalen’s care. “Our lives revolved around those treatments,” she says.

Because Rashida has lupus, she was ineligible to be the donor. Likewise, Jalen’s father, Roy Fields, couldn’t donate due to high blood pressure.

Karen, Rashida’s mother, had volunteered to be a kidney donor for Jalen years before, but discovered that her insurance wouldn’t pay for the procedure. In the meantime, Jalen, who was on the UNOS waiting list, received a deceased donor’s kidney in 2003. It stopped working four years later. He desperately needed another kidney.

After researching living donor transplants online, Karen discovered that the recipient’s insurance pays for the donor’s surgery. “There were no doubts, no fears in my mind. I was just ready to get it done,” she says. “This baby had suffered for so long, it broke my heart.”

Karen proved to be a perfect match: same blood type, same antigens. “I was so thankful. Since he was a little baby, lying in the hospital with all those tubes and machines around him, I would think, Lord have mercy, there has to be something I can do for him. And here, seven years later, there was.”

She also feels lucky to be able to see the benefits of her donation. “People who volunteer to donate their organs on their driver’s license, they don’t get to see the difference it makes in someone’s life. But this is my grandchild. It just makes it extra special.”

Karen and Jalen had their surgeries the Thursday before Mother’s Day, and recovered quickly. The entire family recently returned from a trip to Walt Disney World through the Make-a-Wish Foundation, where Jalen got a complete Captain Hook outfit.

Now, Jalen only has to visit the transplant clinic every few weeks to monitor important factors such as his creatinine levels, which might indicate early signs of rejection. His dad brought him to the transplant clinic on a recent Thursday, slinging his son’s small backpack over his shoulder as they left the waiting room, Jalen zooming ahead.

“Jalen is making up for lost time,” says Karen, a customer service representative at Shaw Industries in Cartersville. “I say just whatever he wants, let him have his way. In another seven years, I’d like to be able to sit down and talk with him about his whole experience, when he’s older.”

But for now, seeing her grandson this active, happy, and energetic—and able to eat whatever he wants—is more than enough. “People told me when I went back to work that I had a glow,” she says. “Honestly, this is one of the best things that ever happened to me.”

Indeed, donors usually do very well with their one remaining kidney—perhaps because they are screened and have to be in excellent health before the procedure, or because they are more vigilant about their medical care afterward.

And children who receive kidneys from closely matched living donors tend to thrive, as well. At Children’s Healthcare, there is a 100 percent three-year survival rate for living donor kidney recipients and donors.

“That’s the most exciting thing about this type of transplant surgery with a child, is that the life expectancy for the kidney is so long,” says Thomas Pearson 82M 88R, kidney transplant program director and surgeon.

While most living donors are one of the child’s parents, donors can be unrelated as well. Pearson has seen spouses, friends, coworkers, classmates, old Boy Scout pals, military buddies, tennis teammates, and fellow congregants from church all donate one of their kidneys to someone in need.

But all things being equal, a living related donor is always the best choice: the transplanted organ is expected to do the most good for the longest time with the least complications.

Pearson and his colleague Christian Larsen 80C 84M 91R, director of the Emory Transplant Center, often operate together, working as a finely honed team. “It doesn’t matter who is primary and who’s secondary, we very much can anticipate each other and work fluidly together,” Larsen says. They have performed hundreds of transplant surgeries in tandem since 1991.

A father himself, Larsen sees beyond his role as surgeon to how it must feel to be able to provide this vital gift. “You can imagine your own child suffering organ failure, dialysis,” he says. “And then to be able to give them a normal outlook on life, to allow them to participate in activities . . . the impact is incredible.”

Just look at six-year-old Helen Moore, the irrepressible granddaughter of William Burton Brown 55C 60L and great-granddaughter of James Lewis Girardeau 1911C 1919L.

At age fifteen months, Helen—Elizabeth and Chris Moore’s second daughter—was lethargic, had low energy, and developed anemia. Her pediatrician referred her to a hematologist, who discovered that her kidneys were functioning at only 10 percent of capacity. “She was very sick, much sicker than she looked, by the time she was diagnosed,” Elizabeth says.

Elizabeth, Chris, and an extended network of family and friends practically lived on the fourth floor of Children’s Healthcare for a month, taking turns holding Helen and sleeping beside her bed. Eventually Helen was able to go home, although she needed to have dialysis for twelve hours each night while she slept. “I had become a medical mom,” Elizabeth says. “It’s such a different world than most parents live in.”

Elizabeth was determined to become a kidney donor for her daughter. “I was healthy and had low blood pressure, while my husband has high blood pressure,” she says. “I turned out to be a good match.”

The surgery took place on November 6, 2003, when Helen was nearly three. “I got a lot of attention for being the donor, but my husband was really the hero: he had a wife and a baby in the hospital at the same time, while caring for and reassuring our older daughter, Catherine,” Elizabeth says. “It was truly a family deal.” Almost immediately, Helen gained color in her face and began showing her true energy level.

This summer, the Moores went on vacation to Canada. The family heads north for most holidays—Helen’s immunosuppressant drugs give her almost no resistance to skin cancer.

While there, they went rafting and swimming in “a river that used to be a glacier,” says Catherine. The water was 39 degrees.

The family had wet suits on, but it was “freezing, freezing, freezing,” says Helen, grinning up at her mother and at the memory of their arduous, marvelous adventure.