A Gift, for Life : From His Father, 2-Year-Old Gets a New Kidney--and New Hope

Jonathan Flores has spent much of his short life in and out of operating rooms and doctors’ offices.

Suffering from a rare and often fatal genetic disease, Jonathan was born with enlarged, dysfunctional kidneys bearing hundreds of cysts. His body, a battlefield in which doctors have waged war on the disorder, is crisscrossed with pale white scars, remnants of several operations including surgery to remove his diseased kidneys.

His stomach, swollen with fluid used in daily, 12-hour dialysis treatments, was drained each evening through a catheter sewn to his side. A thin white tube, used to deliver baby formula, was threaded from his nostril to his stomach.

This was the only childhood the 2-year-old Anaheim boy had known--until last week, when his father, Stephen, gave him a chance to lead a normal life.

During a rare, three-hour operation July 7 at Cedars-Sinai Medical Center in Los Angeles, two teams of doctors transplanted one of Stephen’s healthy kidneys into his son, making Jonathan the youngest kidney transplant patient in the history of the hospital, which has been the site of hundreds of transplants over the years.

“I wanted to give my son a chance to grow up like other kids, to have a normal childhood,” said 25-year-old Flores, a former Marine. Discharged from the hospital Wednesday, Flores was the natural choice to be the donor because he provided a good tissue match, and he said he had no reservations about giving up a kidney for his son.

The outlook is good for father and son, said Dr. J. Louis Cohen, the family’s surgeon. “The baby is doing great,” Cohen said. “Now he will have the opportunity to grow and develop more normally.”

Doctors, however, will keep a close eye on the youngster for the next couple of weeks to make sure he is fully recovered and is responding well to medication used to prevent his immune system from rejecting the new kidney.

Although common in adults, this type of surgery is seldom done on young children. In the United States, only 60 to 80 children under 5 receive kidney transplants each year, Cohen said.

An adult-sized kidney, transplanted into a child, performs the work of two child-sized kidneys, authorities said. Babies must weigh about 25 pounds before they are considered large enough for a transplant.

Bound by faith, the Flores family has held together during their two-year battle with Jonathan’s disorder, called infantile polycystic disease, which affects one out of 6,000 to 14,000 live births. Infants most severely affected by the disorder have a mortality rate of up to 85%, said Dr. Elaine Kamil, the family’s kidney specialist.

“I’m just glad we made it this far,” said Jonathan’s mother, Michelle.

“We just took it day by day, hoping and praying for the best,” she said, recalling how she and her husband kept faith despite the daunting odds.

Jonathan, a wide-eyed boy with an unwavering spirit, has served as the couple’s inspiration. Michelle and Stephen have marveled at their son’s resiliency through many difficult episodes and frustrating setbacks.

“He’s really good about exams and being hooked to machines,” 27-year-old Michelle Flores said. “He doesn’t cry. He doesn’t fuss. He doesn’t complain. He’s come such a long way because he never gives up.”

But the couple learned of courage on their own, even before baby Jonathan was born. An accident that could have resulted in tragedy proved to be a blessing in disguise.

Michelle Flores was eight months pregnant with Jonathan when she was hit by a pickup truck while walking home one afternoon. She was rushed to a hospital, where it was determined that she had escaped with scratches, bruises and a broken elbow. But doctors performed an ultrasound examination to check the fetus and found her baby’s kidneys were abnormally large because of a genetic disorder.

Doctors told Michelle Flores that her baby’s chances for survival were slim. “They were preparing me for the worst,” she said. “But we kept hoping and praying.”

But baby Jonathan did survive, in large part because doctors knew about his condition in advance and were prepared to deal with any complications during his birth.

But there were more hurdles to overcome.

After birth, Jonathan’s kidneys continued to steadily deteriorate. When he was 9 months old, he was flown by helicopter to Cedars-Sinai, where his kidneys were removed and dialysis treatments were started.

Since then, Jonathan has survived numerous life-threatening episodes, including a series of medical setbacks that postponed the transplant surgery originally scheduled months ago. He has suffered pneumonia, two episodes of peritonitis (an infection of the abdominal lining) and cardiac arrest, which led to heart surgery.

And each evening for the past two years, Michelle and Stephen have performed the life-preserving ritual of hooking their son to a dialysis machine in their Anaheim apartment. The parents have been trained to perform a procedure called peritoneal dialysis, in which a special solution is infused in Jonathan’s abdominal lining, enabling it to perform the job of his missing kidneys. The solution, which is later drained through a catheter while he sleeps, cleanses his blood and removes bodily impurities.

With the transplant operation a success, this routine promises to be a thing of the past. From now on, Jonathan will be freed from the daily dialysis treatments and will have the opportunity to grow normally, said Cohen, the transplant surgeon.

At 24 pounds, Jonathan weighs much less than other boys his age. He is closer in size to his 15-month-old brother, Junior, whom people mistake for his twin.

Yet under his parents’ care, he has blossomed from a thin, sickly infant to an active, engaging toddler.

The future looks very bright for Jonathan, said kidney specialist Kamil. In children, 80% of kidneys transplanted from related donors continue to function after four years. “Many of these kidneys can function indefinitely,” she said. Doctors hope Jonathan will never need another transplant.

Barring complications, Jonathan now will have the opportunity to grow regularly and to have a more normal childhood.

“There may be more difficult times ahead, but we’ve already gone through so much and we’re that much stronger,” Michelle Flores said.

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Polycystic Disease Profile Infantile polycystic disease occurs when cysts form in the liver, pancreas and other organs, usually causing kidney dysfunction or failure. Only 15% of the children suffering from this hereditary problem survive. Some facts: * Cause: Inherited, caused by an abnormal gene * Symptoms: Enlarged kidneys, bloody urine, high blood pressure, kidney failure * Diagnosis: Ultrasound test, family blood test * Treatment: Dialysis until child is old enough for kidney transplant, which is only cure

Transplant Facts Kidneys made up nearly 60% of all organ transplants performed nationwide in 1994, but fewer than 50 children younger than 5 received new kidneys. The picture of kidney transplants: * Requests: 29,318 * Operations performed: 10,622 * Live donor transplants: 2,980 Source: National Kidney Foundation; Researched by APRIL JACKSON/Los Angeles Times