Thursday, January 25, 2001

Baby desperate for heart

Without new one, 8-month-old has mere days to live

By Susan Vela
The Cincinnati Enquirer

        Eight-month-old Christine Anne Kupets could die within days if she doesn't receive a new heart.

        Hers is one of thousands of potential transplants nationwide that could end in tragedy, said her doctor.

[photo] For nine weeks, Connie and Thom Kupets have waited with their daughter, Christine Anne, stricken with cardiomyopathy.
(Gary Landers photos)
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        “The biggest risk is that it's a little harder to get hearts for those under the age of a year,” said Dr. Jeffrey Paul, director of pediatric heart transplants at Children's Hospital Medical Center.

        “It's very dire. She basically has a matter of days left. (But) she's a fighter, and everybody here would love to get a heart for her. We're just hoping.”

        In 1999, 700 people across the nation died while waiting for a new heart. In 1998, the number was 768. For both years, 13 percent — nearly 100 — of those deaths were youngsters 18 and under.

        To Christine Anne's parents, Thom and Connie Kupets, the numbers are grim. The Versailles, Ky., couple has been camped out at Children's since November waiting for a heart.

        The child, diagnosed with severe heart problems at 7 weeks of age, has been on a waiting list for a heart since December.

[photo] Connie Kupets caresses her daughter, Christine Anne, who desperately awaits a new heart.
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        She appears helpless while hooked up to an ECMO (Extracorporeal Membrane Oxygenation) machine, which is meant to substitute as a new heart until a real one is found.

        Her parents know that the child's body can stand only a few more days on the machinery before complications arise. At that time, she is no longer a viable transplant candidate.

        That's why they're pleading with other parents to consider organ donations should they ever face a similar situation.

        “If they can see through their grief, I don't think there would be any regrets,” Mrs. Kupets said. “What we pray for is a family to have the strength to make that decision.”

        In June, Christine Anne turned blue while in her mother's arms and started panting.

        “She completely crashed,” Mrs. Kupets said, recalling how the child's heart began to beat erratically.

        Christine Anne was rushed to a hospital. Doctors stabilized her with medication and referred her to the University of Kentucky Hospital, then to Children's.

        She returned home in July but has been under medical care since. She had a setback in the fall.

        In December, doctors told her parents she needed a new heart.

        Then on New Year's Eve, Christine Anne's heart started beating erratically again. Her condition worsened until the Kupets decided to put her on the ECMO machine last week.

        Today, they rarely leave her side and take turns holding her fingers. Christine Anne often squeezes back.

        The parents cry when they talk of how much they yearn for a new heart.

        “We never knew we could experience so much joy as when she came into our lives,” Mrs. Kupets said.

        If someone donates a heart, “we'll keep her healthy and happy and treat her like a normal child,” she said.

        Mr. Kupets takes strength from knowing his daughter is a fighter, which will bode well if she gets her heart.

        “These little kids ... don't know the word "quit,'” he said.

        People who undergo successful heart transplants usually need a second transplant within five to 10 years.

        “I really hope that we can get (those in need) an organ before they die,” said Jeff Leuders of LifeCenter, the agency that manages this region's organ donations.

        “It's unfair that we can't get organs for everyone who needs them.”

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