Health Sciences Report Summer 2004

When the Doctor Becomes the Dad
By Susan Sample

Portrait by Sean Graff

At the moment when love and fear collide at a child’s bedside, blurring the “right” treatment choice, families often turn to the doctor—not for a more definite prognosis, but for empathy.

“What would I do if this were my kid? In pediatrics, most of us approach the care of our patients this way,” said Joseph R. Sherbotie, M.D., associate professor of nephrology in the medical school’s Department of Pediatrics. “Some would say it’s a bad approach, that you can’t be as objective as you need to be. For me, it’s become a bit more real.”

Sherbotie, like many of his colleagues, is a father. He and his wife, Sara, a veterinarian who teaches pre-nursing classes part-time at Westminster College of Salt Lake City, have a 13-year-old son and 11-year-old triplets (two sons and a daughter). Three and a half years ago, they decided to become foster parents to seven-year-old Andres, a boy they hoped, someday, to adopt. Last December, it was finalized, and Sherbotie gained not only a fourth son, but experiences that have changed the way he practices medicine.

To put it in the words of Andres, when he told his second-grade class about his kidney transplant two years ago: “He used to be my doctor. Now he’s my dad!”

“I’m not his doctor now,” noted the nephrologist, who is medical director of the U Pediatric Renal Transplant Program. “I’ve had to figure out what’s appropriate for me to do and what others need to make decisions about.

“There’ve been adjustments on everyone’s part,” he admitted. “I have to say that, at first, the adoption led to friction between myself and the other nephrologists, dietitians, and others. They expected that I’d stop being a nephrologist, because I was the dad. But I know about kidney failure. I have opinions about how dialysis should be done. It’s eye-opening when you’re the advocate for your kid,” he said.

Sherbotie first met Andres as a patient in the renal clinic. He was being treated for nephrotic syndrome, a condition in which the body loses a significant amount of protein through the urine. The entire body swells, and the patient is prone to infection. “It’s difficult to control,” explained Sherbotie, one of four U of U pediatric nephrologists. “He didn’t respond to immunosuppressants. Over time, his kidney function worsened.”

For six months, Andres was hospitalized at Primary Children’s Medical Center, adjacent to University Hospital. The boy, whose age was estimated somewhere between five and six years old, didn’t speak English. His mother was a young woman from Mexico, unable to care for one son with a life-threatening disease as well as a younger sibling. Andres became a ward of the state.

“He has quite a personality. He was very outgoing and willing to please. It helps to be manipulative—and he was,” recalled Sherbotie, smiling. “Everyone in the hospital wanted to adopt him.”

That was not the nephrologist’s initial intention. Like his colleagues, he simply rotated through the hospital. “Because I’m on service a lot, I saw Andres a lot,” said Sherbotie, a slight man who seems to listen more than he speaks. “I don’t know what it was that drew me to him.

“Every now and then, my wife would say something about adopting an older kid with problems, and I’d say, ‘What, are you kidding?’”

By this time, Andres had developed kidney failure and was on dialysis. He was in his second foster home, but it wasn’t working out. Sherbotie contacted the boy’s caseworker. “We arranged to go do something with all of our kids. We went to the Museum of Natural History, then on a picnic.”

The Sherboties quickly took the classes required for certification as foster parents. Andres, who spoke English by then, moved into their home, and the physician soon learned what it was really like having a child on dialysis.

“It’s a little different living it. One thing I didn’t expect was how crappy people feel on dialysis,” said Sherbotie. He told how Andres would cut a tiny piece of meat into slivers, so he wouldn’t throw it up. He did anyway. “That was hard. For a while, he had a feeding tube from his nose to his stomach. You’d think it would be easy having it in overnight. But he’d throw it up. That’s when my wife said, ‘Enough of that.’

“It’s difficult for me now when some families get comfortable on dialysis and don’t want to risk a transplant.”

Then came the night the Sherbotie family got the call that there was a donor kidney for Andres. “It was exciting and sad at the same time. At first, it was ‘oh, wow!’ Then it was ‘ooh.’ Someone died, and you feel guilty.” With the help of Intermountain Donor Services, the family has written a thank-you letter and plans to continue writing to the donor’s family for contributing to Andres’ successful transplant, which Sherbotie feels “has been good for everyone.”

“The transplant made an amazing change. It was like someone flipped a switch. He just wasn’t sick anymore,” said Sherbotie. “Before, it was hard to get him to eat enough to stay healthy and grow. Afterwards, he ate everything in sight—except he’s not a big fruit-eater.”

Andres has experienced only one serious health problem since the transplant. Protein was detected in his urine during a routine lab test, which could have been a sign of recurrence. Fortunately, it was treated—at the direction of another nephrologist—with plasmapheresis.

“I used to look at the computer every five minutes to check on the results of his lab tests. Now I’ll wait a whole day,” said Sherbotie. Every month, post-transplant renal patients must give urine samples and have their blood drawn to monitor levels of immunosuppressants and other medications. “Now more than ever, I’m convinced that some things we ask parents to do are easier. I’m less tolerant than I used to be. When parents don’t get their kid’s labs done and say, ‘We’ve been busy,’ I’ll say, ‘Well, so have I!’

“But it cuts both ways,” acknowledged Sherbotie in his soft voice. “I’m less dogmatic now. I look at what we ask patients and their families to do, and ask, ‘Does it make sense? Is there an easier way to do it?’

“In medicine, we do a lot of things we’re convinced are right, but we don’t always have the data to back them up. We need to think about what we’re doing and why we’re doing it. I’ve become more sensitive to that.

“It’s helped me with my patients,” added the physician-parent. When someone asks him what he’d do in a certain situation if it were his child, “they believe me.”

U Pediatric Transplant Program

Whether their specialty is heart, kidney, or liver, the medical directors of pediatric transplant programs share a common concern for their patients.

“We want to give them a childhood as close to normal as we can,” said Robert E. Shaddy, M.D., professor and chief of the Division of Pediatric Cardiology.

“Children are resilient in recovery,” said Linda S. Book, M.D., professor and chief of the Division of Pediatric Gastroenterology, “but they’re more vulnerable in growth. We like to achieve transplant before their disease affects their growth, muscle strength, and neurological development.”

Begun in 1981, the Pediatric Renal Transplant Program is the oldest of the three headed by U of U medical school faculty. “Our program has been pretty progressive,” noted Joseph R. Sherbotie, M.D., associate professor of pediatric nephrology and medical director since 1996. “We’ve had input from pharmacists, and we’ve tried different immunosuppressant protocols.”

Between eight and 16 children receive kidney transplants every year at University Hospital. The first-year survival rate—95 percent—mirrors the national average, according to Sherbotie. The 10-year survival rate for children—40-70 percent—surpasses that for adults.

Adolescents have the lowest survival rates due primarily to noncompliance. “I don’t even think it’s always intentional. They’re just not as organized. They don’t remember if they took their meds,” said Sherbotie. That’s when rejection can begin to “smolder,” with changes often detectable only through routine lab tests.

But teens also are known to put off being tested. “When they do, it can be too late to effectively treat them,” said the nephrologist. If they lose their transplant, they must return to dialysis and wait for another donor kidney. With each subsequent transplant, however, “it’s harder. The body may have developed antibodies, which makes it more difficult to find a kidney that matches. And survival rates with a second transplant are not as good,” he added.

While dialysis can sustain patients, it also can contribute to developmental problems in pre-adolescents, according to Sherbotie. Bone disease related to kidney failure can cause deformities, such as bowed legs. Missed school due to dialysis treatments can result in cognitive developmental delays. Children on dialysis tend not to eat well, which also can affect their physical growth and development. Some will never attain normal adult height.

For children awaiting heart transplants, there are limited mechanical circulatory support devices available, according to Shaddy, medical director of the Pediatric Cardiac Transplant Program. The ECMO (extracorporeal membrane oxygenation) serves as a bridge to transplant, but lasts just days to weeks, said the cardiologist. The only long-term solution is the LVAD (left ventricular assist device), but pediatric patients must be near adult-size for it to fit.

Most critically ill children wait at least two to four weeks for a heart transplant, said Shaddy. Older children can wait longer than one year. One-tenth as many children as adults need heart transplants. “Because we have more surgical techniques and better medicines, we’ve been able to do fewer transplants, especially in infants, than we did 10 years ago. That’s a good thing,” he added. “It’s better if you can get by with your own heart.”

The most common conditions requiring transplants are congenital heart defects and dilated cardiomyopathy. Shaddy described the latter as “a sick heart muscle” that may be caused by a virus, as in adults.

The first pediatric heart transplant in Utah was performed in 1988 at University Hospital. When Primary Children’s Medical Center opened in 1991, the program was moved there, under the continuing direction of U faculty members. A total of 63 transplants have been performed in patients ranging from eight days to 24 years old. The one-year survival rate is 85 percent; the three-year survival rate, 75 percent. Both match the national average.

“Our biggest concern,” said Shaddy, “is the long-term survival of the graft. We’re looking to find ways to have the transplanted hearts last 60-70 years, so the children may live long lives.” In contrast, adults, whose average age at transplant is in their late 50s, need their donor organs to last 20-30 years.

“Children have the same type of problems as adults with rejection and coronary artery disease,” noted Shaddy. There also can be problems with long-term kidney function due to the toxicity of immunosuppressants. One heart recipient had to have a kidney transplant several years ago, but is doing very well, he said.

“We occasionally do re-transplants in children. I’m sure we’ll do more as time goes on,” he added.

Since the Pediatric Liver Transplant Program began in 1996, the team of physicians, surgeons, nurse coordinator, dietitians, and social workers has performed 74 transplants in 61 patients, ranging in age from four months to 20 years. The overall survival rate is 93 percent, according to medical director Book.

The major cause of liver transplants in children is biliary atresia in which the bile duct is missing. Book estimates that 20 percent of her patients are born with the disease. “If diagnosed by age two months, surgery provides a conduit for the bile to drain, which may prevent scarring and irreversible damage to the liver,” she explained.

Waiting time for a transplant is calculated using the Pediatric End-stage Liver Disease (PELD) score. Patients are given points for different parameters—lab tests, height, weight, among others—to determine how sick they are. The mean waiting time in 2002 was 130 days; the median was 71 days, said Book. Candidates for liver transplants have no supportive care like dialysis or mechanical assist devices available as backup.

The actual surgery is lengthy and very complicated. “Blood vessels, arteries and veins, and the bile duct, which are all very small, must be connected,” said Book. “Technically, it’s a very challenging procedure.” Surgical complications, such as blood clotting, can result in re-transplants.

Once they’ve successfully received a new liver, however, children’s liver disease won’t come back. “They’re cured, for the most part,” said Book. “Now they’re managing a transplant.”

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