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- October 08, 1984
- Vol. 22
- No. 15
One Small Miracle
A Historic Transplant Can't Stop Stormie Dawn Jones
"Who can count from 1 to 100?" Ann Dunaway asks in that cheerfully encouraging tone that first grade teachers seem to come by as a birthright. She scans the roomful of 25 eager youngsters, sees that Stormie is anxiously waving her hand and calls on her.
"I have a sore throat," the little girl announces.
"Well," says Dunaway, looking away, "would anyone else like to try counting?"
Stormie leans over her desk, rests her chin on her crossed arms and goes into a full-scale pout, unable to understand why her complaint is being ignored. Given the vast amounts of immunosuppressive drugs Stormie takes each day, seriously weakening her resistance to infection, even a sore throat might indeed have ominous implications. What she cannot know, however, is that Dunaway, more concerned with Stormie's psyche than with her physical health right now, is making an effort not to single out for special attention the student she calls "our celebrity in class."
As it happens, Stormie is special, though not in ways that any parent would envy. To begin with, there is her appearance. Her face is puffy. The hair on her arms and legs is thick and long. Her hands are dotted with wartlike lesions, or xanthomas, symptoms of a rare genetic disorder that destroyed her heart and arteries and carried her to the brink of death. Her chest is a landscape of scars that tell the story of an agonizing ordeal: One marks where a surgeon's saw sliced her chest open three times. Others indicate where tubes have been inserted and holes punched to sustain a life that, until recently, few thought could be saved. On Valentine's Day 1984 Stormie received a heart and liver transplant at Children's Hospital of Pittsburgh—the first human being ever to receive a simultaneous implant of those two organs. The unprecedented step was Stormie's only hope of survival. "She was desperately ill," says Dr. David Bilheimer, her internist at the University of Texas Health Science Center at Dallas. "She had already had one heart attack, and after that, severe angina pain and heart failure. Her heart was so badly damaged she could not have lived a year."
Yet now, miraculously, after two heart-bypass operations and her dual transplant, Stormie has returned to the first grade, an active 7-year-old who has had little trouble readjusting to normal life. "One day out on the playground I saw her lifting her shirt and showing someone her tummy," says teacher Dunaway. "But the kids don't see the significance of what has taken place. They treat her like all the others."
Stormie's traumatic series of medical crises began with a one-in-a-million genetic defect called homozygous familial hypercholesterolemia. Her liver, unable to process properly the cholesterol that was clogging her tiny arteries and heart, was a major cause of her problem. On Jan. 2, on her doctor's advice, Stormie's mother, Susie Jones, checked the child into the Pittsburgh hospital where the heart and liver transplants were performed. "They gave us no odds at all," recalls Susie, 28, who had quit her job as a waitress in Cumby, Texas to devote all her time to Stormie's needs. In Pittsburgh, Susie was told that it could take up to two years to find a suitable donor—but that Stormie had just weeks to live. Tearfully, she began to prepare her daughter for the possibility of death. "I explained to her that death meant your body stopped breathing and you went to heaven," Susie remembers now. "We were on a floor with cancer patients. Every other day Stormie would see kids die, including some of her best friends. She said, 'I know they're in heaven, but I'm not gonna die.' "
Six weeks after Susie and her daughter arrived in Pittsburgh, Katie Rebstock, a 4-year-old from Palmyra, N.Y., died in an automobile accident. Her parents consented to having her organs transplanted to the young Texas girl they had never met. On Valentine's Day Stormie was wheeled into surgery. "I was afraid I would die and not make it," she says now. "If I died, my mom would start crying. She loves me. I didn't believe I would wake up, but my mom said I would." It took 16 hours and a team of more than 24 nurses and physicians (headed by liver transplant pioneer Dr. Thomas Starzl and cardiac surgeon Dr. Henry Bahnson) to do the job, but wake up she did.
There is no such thing as normal for a little girl who will have to go through life with the unenviable label of "medical miracle" prefixed to her name. Nevertheless, Ann Dunaway is doing the best she can to ease Stormie into the regular routine of a first grader. She began by explaining Stormie's unique experience to the other children in the class. "I told them when school started that Stormie had a very special operation that other children haven't had and that she was unusual in that way," says Dunaway. "I don't know how much they understood." Some of the children teased Stormie about the yellowish lesions that began to cover her body when she was 3 months old and have not yet completely disappeared from her skin. Still, most of her friends and classmates are beginning to accept her as one of their own.
In fact, some have been a little too accepting. Scotty Stewart, 6, who Stormie says "has a crush on me," once hit her hard. Recalls Scotty's mother, Linda, "I called him over and I made Stormie show him her scars. I told him that if he hit her again he could kill her. It broke his heart."
While Stormie tries to blend in with her peers, her medical needs set her apart. Every morning just before class begins, she goes to the school nurse for a dose of Cyclosporine mixed in skim milk. The drug—whose discovery a few years ago revolutionized transplant surgery because it suppresses the body's natural tendency to reject foreign tissue—has a number of unpleasant side effects. It causes the excess hair that grows on Stormie's arms and legs. It lowers her resistance to infection. And, according to a study released just this month, it may also severely impair her kidney function. Cyclosporine is just the appetizer on her daily drug menu. She also takes Prednisone, which causes her facial puffiness, and a congeries of four other medications including aspirin and iron tablets.
Improbably, Stormie has kept her humor and energy. She loves to romp on the school's play equipment and run around the school ground with her classmates. Her teacher has qualms about such activities and sometimes keeps Stormie on the sidelines during midmorning recess. Even Dr. Bilheimer admits to some unscientific squeamishness. "Once she jumped up on me, and I grabbed her by the legs and shook her up and down," he recalls with a laugh. "Then I said to myself, 'Hey, should I be doing this? I might shake something loose.' But things are pretty well anchored in there."
Things are also pretty well anchored in Stormie's home, a modest two-bedroom apartment several blocks from her new school. She spends her spare time watching cartoons on television with sister Misty, 10, dancing to her "Mousercise" album or her favorite Michael Jackson records, helping Susie clean their cluttered apartment and making occasional forays to such local amusement parks as Sesame Place and Six Flags Over Texas. (Her father, an itinerant oil driller, has little contact with the family.) "The hardest part of the ordeal has been trying to get us back as a family unit," says Susie. "Misty was getting used to not having a sister and Stormie was used to being around adults. When she came back from Pittsburgh, she didn't want to play."
Unemployed ever since Stormie's surgery, Susie has had a hard time finding a job. "When I tell employers about Stormie, and how I might have to look after her in emergencies, they are hostile," she says. "They don't like the idea that I might have to run home." Meanwhile, the family is living on some $15,000 in public donations, which must also defray Stormie's $675-a-month bill for medicine.
At 7 o'clock on a recent Tuesday morning, Stormie and Susie boarded a bus in Garland for the 45-minute drive to the Dallas clinic that has become an integral part of their lives. Stormie and Susie walked through the maze of corridors to an examination room, where the little girl reluctantly allowed a pair of nurses to take a blood sample, then submitted to a checkup by Dr. Bilheimer. The physician felt Stormie's glands, found them swollen but pronounced the problem just a mild virus.
Bilheimer then examined his patient's xanthomas. "Making progress," he announced. "They're shrinking. They're starting to pucker up and recede." Mother and doctor conferred about Stormie's medication. Susie held up a bottle of iron tablets like a talisman of victory. "When she's down to her last tablet, I'll know she's been out of here 100 days," she said exultantly.
For Susie Jones, with so much sadness behind her, the present is a time for rejoicing and giving thanks. "I came so close to losing that child, I'm going to enjoy what time I do have with her," she says. But there is one act of thanksgiving yet to be performed. When she gets a job and can afford it, Susie intends to buy two plane tickets to Rochester to take Stormie to see the parents of Katie Rebstock, the little girl whose death gave Stormie life. Susie has never called or written the Rebstocks. She feels that anything but a face-to-face encounter would be awkward, impersonal and somehow not enough to express the thanks she feels. She wants to be able to show Katie's parents, up close, the good that has come out of their tragedy. "I don't know what I'll say when I see them," she reflects. "I'll probably cry. Stormie, in essence, is a part of their child. They should meet her. I don't have the right to be selfish."
- Cable Neuhaus.
October 10, 2015
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