Monday, January 14, 2002

Transplant families share grief, joy


Boy's heart beats on in 2-year-old girl

By Tom O'Neill
The Cincinnati Enquirer

        He's the Little Hero from Dubuque, Iowa. She's the Miracle of Colerain. Their families are bound by grief and hope.

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Heart recipient Asia Miller, 2, with her grandmother and guardian, Dawn Miller.
(Steven M. Herppich photos)
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        A year ago in Iowa, 5-month-old Cole Hollenback died of a genetic disorder that attacked his brain. His parents decided his healthy heart could help someone else.

        In Cincinnati, Asia Miller was critically ill. Word of a donor came on her first birthday.

        Now 2, Asia has an excellent prognosis, and news of her progress connects two families separated by 473 miles.

        The relationship between the families began with a letter from Dawn Miller, Asia's grandmother and guardian. Then photos and family updates were e-mailed back and forth.

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Cole Hollenback
(Photo provided)
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        The Hollenbacks sent Asia a birthday present last month. For Christmas, Asia's great-grandmother sent the Hollenbacks a picture frame wrapped in angel's wings.

        “Every time we get something from them, you grab a box of Kleenex,” Cole's mother, Mary Hollenback said. “Cole's heart couldn't have gone to a better family.”

        The families haven't met, but they hope to someday.

        “If we could meet and they could feel Cole's heart beat,” Mrs. Miller said. “It's something that's beyond my ability to comprehend, to put my hand on her chest at night and know (that it is Cole's heart beating inside). ..On an emotional level, I feel very connected with them.”

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        Nationwide, 85 heart-transplants were performed in 2001 on recipients two years old or younger, according to the United Network for Organ Sharing. It was the first time that number fell below 100 since 1989.

        But as of Dec. 31, another 80 such babies were on the waiting list. That's 10 times the number on the same date in 1988.

        Donors' families can remain anonymous, and many do. But not this time.

        “We didn't want that question in our minds,” Mrs. Hollenback said by telephone from Iowa. “Did he help somebody? It's like being buried with your golf clubs, you know. It's just pointless.”

        The Hollenback family has been touched by the updates from Mrs. Miller about Asia.

        “She could have just sent a thank-you note,” Mrs. Hollenback said.

        A mere thank-you was never an option.

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Dawn Miller and Asia.
(Steven M. Herppich photo)
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        The week before the transplant, Mrs. Miller recalls Asia going limp and being rushed onto a ventilator and revived. Realizing Asia's deteriorating condition, Mrs. Miller slumped in a rocking chair that winter day at the pediatric intensive-care unit at Cincinnati Children's Hospital Medical Center and sobbed.

        “If (Asia) hadn't gotten the heart,” said Dr. Jeffrey Pearl, who performed the transplant surgery, “none of us thought she'd make it another week.”

        Fast forward a year:

        “My house looks like Toyland right now,” Mrs. Miller said. “This child has changed my life in every way. She's the center of it. How do I thank them?”

        With advances in tissue typing and immunosuppressant drugs in recent years, pediatric transplants, including the heart, are increasingly successful.

        “Asia has done extremely well, but I can't tell you that'll be a 10-year-deal, or 20 years, or longer,” said Dr. Rob Spicer, the director of the cardiac transplant program at Children's.

        In the past two two years, Children's Hospital has performed 12 pediatric heart transplants. All the recipients are still alive.

        The decrease in overall transplants, Dr. Spicer said, is due largely to improved care for ailing organs and people living longer, reducing the number of potential donors.

        “Nowadays, statistically, half of all heart transplant patients will be alive in 10 years, and that is far greater than it was before,” Dr. Spicer said.

        Medical science has improved at keeping organs fresh, then tricking the recipient's body into accepting the organ.

        But even that has perils. Transplanted hearts grow, but don't always last. Recipients typically suffer side effects such as weakening of the coronary arteries, Dr. Spicer said.

        Asia has passed an “out of the woods” period of six months to a year, when most problems emerge for patients rejecting a transplanted organ.

        Even so, Asia likely will need another transplant, though it's impossible to know when.

        Mrs. Miller is the director of materials management in clinical engineering at Children's. She knows the statistics, hears the stories.

        Asia was born with multiple heart defects; her heart was more like a sponge than a muscle. Once it was clear that a heart transplant would be needed, Asia's fate boiled down to waiting for another family's loss.

        In late 2000, in Dubuque, four-month-old Cole Hollenback's breathing became labored. Doctors said he had a cold, Mrs. Hollenback recalled.

        The week before Christmas 2000, Cole's babysitter frantically called his mother. He wasn't breathing right. Rushing home, Mrs. Hollenback saw an ambulance.

        Cole was suffering from mitochondrial myopathy, a genetic disease affecting his brain. His other organs were fine.

        “The doctor, I could tell by the look in her face,” Mrs. Hollenback recalled, her words slowing. “She said, "I'm sorry for your loss.' I was hysterical, bawling in the waiting room. It was strange, but a feeling said, Donate. I wanted to make him a hero.”

        Her husband, Tod, agreed.

        Asia was one year and one day old when she got her new heart.

        A day or two later, Mrs. Hollenback learned she was pregnant. In September, she gave birth to a boy, Colin Cole.

        With Asia struggling to recover from the surgery, Cole Hollenback was buried. His tombstone reads: “Little Hero.”

        “I have a feeling he's watching over her,” Mrs. Hollenback said. “I really do.”

       



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