The Beat Goes On : Donated Hearts and Skilled Medical Care Give Life to Infants, Hope to Parents

When Jonathan Mark returns to the Loma Linda International Heart Institute, his mother wheels his stroller through a lobby lined with life-size color photographs of the children who came before him.

There is Baby Moses, and Baby Eve, dressed in play clothes, smiling icons of what the future may hold.

Like Jonathan, these children are members of a pioneering corps, some of the 153 children under the age of 6 months to receive heart transplants at Loma Linda University Medical Center since the technique was first tried there in 1985.

Jonathan became number 124 more than a year ago when surgeons cut open his 5-week-old chest to save his life by implanting a new heart the size of a walnut. Television crews stood by that night in January, 1992, ready to report the results of the successful surgery in time for the 11 p.m. news.

Now, the celebrity glare has faded for most of these transplant children, testimony to how swiftly medical miracles can become routine. The media have moved on to new technological horizons, events like last weekend’s first gene therapy on a newborn.

But even out of the limelight, 17-month-old Jonathan and his young cohorts are still subject to intense scrutiny by doctors monitoring just what happens to an infant who grows up with someone else’s heart beating in its chest.

No one knows for sure what will be normal for a child like Jonathan when he reaches the age of 10, or 15, or 20. Baby Moses, the first successful infant-to-infant heart transplant, performed at Loma Linda in November, 1985, has not yet turned 8 but is doing well, hospital officials report.

Of the 153 infants given transplants at Loma Linda, 117 are still alive.

“The goal is a normal life span. Going to school, going to college. Having families,” said Dr. Richard Chinnock, medical director of the Loma Linda pediatric heart-transplant program.

Betting on their son, Jonathan’s parents, Eva and Kevin Mark of Torrance, both 27, have already started his college savings fund.

When people describe Jonathan, they frequently use the word normal-- a miracle in itself considering his problems at birth. He was born with a defective heart and doctors determined only a transplant could save him.

Since then, his recovery has gone smoothly, and his life is much like that of any toddler. His heart has grown with his body and is now plum-size, his doctor says. He started walking the day before Easter, and now he chugs around the living room at a near run. He eats a regular diet--his favorite food is ravioli--although he just acquired a taste for peanut butter and jelly sandwiches.

But twice a day Jonathan must swallow cyclosporine, an immunosuppressant drug widely used after transplants to suppress the body’s tendency to reject a new heart. He is taking two medications daily, down from nine when he first left the hospital.

Concern about infection is a constant. As a measure of their caution, Jonathan’s parents have a family friend care for him during the day, fearing that a large day-care group could expose him to an infection from other children. A simple case of chickenpox could affect Jonathan severely because his body’s natural defenses are suppressed by drugs, doctors say.

Medication has also toughened his gums, painfully stretching out the time it takes new teeth to break through. So Jonathan rubs his mouth and cries. The medication also promotes hair growth, giving Jonathan a set of lush, dark eyelashes.

To date, Jonathan has not suffered a single rejection episode. The biggest scare so far came last fall when he suffered a bout of stomach flu, his temperature rising to 104. It passed in a few days.

It was just one day after Jonathan’s birth on Dec. 16, 1991, that a nurse detected a heart irregularity. Testing showed that the left side of his heart was so underdeveloped that it could not pump blood properly. The condition, known as hypoplastic left heart syndrome, is normally fatal within weeks.

His parents decided to fight to save their firstborn child. They contacted Loma Linda hospital, and, after a physical exam, Jonathan was placed on a list of potential heart recipients.

Then, on Jan. 22, 1992, a suitable heart was located, and Jonathan’s five-hour transplant surgery was conducted by Dr. Leonard L. Bailey.

While more than two dozen such transplants were performed at the hospital in 1992, only five have been done so far this year--the most recent on Thursday when a 2-month-old girl got a new heart. Hospital officials say the slowed pace is due to two factors: More centers are doing such transplants, and the supply of donors of all ages has not kept pace with demand.

“The success rate has made so many more patients candidates for organ transplantation that the gap continues to widen,” said Joel Newman, spokesman at the United Network for Organ Sharing in Richmond, Va.

That gap concerns Jonathan’s parents, who want to encourage more people to become donors. Eva Mark tries to persuade colleagues at the Irvine travel agency where she works to consider signing up as donors. One co-worker has agreed; three more are thinking about it.

“We have Jonathan as sort of our benchmark here. We know the potential benefits. It’s just a shame that other parents are missing out on the good fortune that we have,” said Kevin Mark, a financial adviser with Prudential Securities in Pasadena.

Jonathan lives with his parents in an apartment on a quiet cul-de-sac in Torrance, where their lives have settled into near normalcy. Kevin and Eva think about having another child, maybe next year. Eva recently picked out a Catholic elementary school that she wants Jonathan to attend.

Like many toddlers, he walks with a sailor’s rolling gait, delighting in the smacking sound of his rubber sneakers hitting the floor. The high point of his month: his first trip to Disneyland. His major accomplishment so far this week: cutting his fifth tooth.

Still, there are times when the Marks feel uneasy with the lack of hard statistical data that would tell them what kind of life their child might expect.

“Sometimes you just want someone to give you an answer, yes or no. But I guess we just wait and see,” Eva said.

To monitor his progress, Jonathan’s parents frequently take him on the 160-mile round-trip drive from Torrance to Loma Linda hospital in San Bernardino County. There he is tested to see how his body, and his heart, is developing.

Earlier this week, he spent most of the day at the hospital for two tests he will receive annually.

In one test, slightly radioactive dye was injected into his blood to measure his kidney function, because cyclosporine can cause kidney damage.

The second test studied his heart for 24 hours, using a portable EKG device known as a Holter monitor.

“Hello, Jonathan, we’re going to hook you up like a robot today,” teased a technician before she pulled up his T-shirt to implant five electrodes on his chest. Then she strapped an adult-size monitor to his back, looping the straps around his shoulders.

Puzzled by the weight, he readjusted his posture and set off down the corridor on his own, quickly adapting to the black box dangling from back.

Jonathan seemed uncommonly at home in this hospital, barely fussing as his mother whisked him from floor to floor, test to test. He drew a few smiles in the nuclear medicine waiting room when he began rolling a small foam ball under the chairs.

The Marks say that Jonathan’s medical bills for 1992 totaled about $470,000. The transplant surgery was covered by his mother’s insurance. Jonathan is now covered by his father’s policy.

Eva Mark knows that someday Jonathan will ask her about the vertical scar on his chest, and she and Kevin will tell him about the transplant.

At the Marks’ apartment near Hawthorne Boulevard, two photo albums trace Jonathan’s life.

One contains the photos after Jonathan came home from the hospital; that is the one she usually shows guests. But there is a second album showing him in the hospital, attached to wires and machines.

Jonathan will see it one day if he asks. He can also watch videotapes of the television coverage of how he acquired his new heart.

“When he gets older,” Eva Mark said, “I think he’ll think it was pretty neat.”

Transplant Technology Advances

Heart-transplant technology has progressed significantly since Dr. Christiaan Barnard performed the first transplant in South Africa in 1967. The technique was spurred on with the advent of the anti-rejection drug cyclosporine, which the FDA accepted for use in 1983.

There were 2,173 heart transplants performed on patients of all ages in the United States in 1992, according to the United Network for Organ Sharing. That same year, 13% of waiting patients died before a heart could be found.

Network figures show that, among recent transplant patients, 77% have lived two or more years after receiving a new heart.

Most transplants have been done among middle-aged patients, but the number of transplants among children 5 and younger has risen rapidly in the United States, from 62 in 1988 to 169 in 1991.