By Nick Buglione
Every night before Shelby Caban lay down for bed in her hospital room at Columbia University Medical Center, she and her mother Bea would say a little prayer.
They would pray that one day a donor heart would be available so Shelby, 10, could undergo life-saving transplant surgery.
It wasn't an easy thing to ask the Lord, especially for Bea, who knew her young daughter's life depended on the death of another. "How can you pray for the death of a child?" said Bea, who has lived in East Meadow with her husband, Orlando Caban, son Ernesto, 13, and Shelby for 10 years. "That was my biggest problem the whole time that I waited. Another parent's grief was going to be my happiness. And that was hardest for me."
For 40 agonizing days in December and January, Shelby and Bea, who never left her daughter's side at the hospital, waited for a donor. Then, finally, their prayers were answered.
Shelby received a heart transplant in a little over five hours of surgery on Jan. 12. Though a confidentiality agreement prohibited the Cabans from learning who the donor was, Shelby knows exactly what she'd say if she could talk to the child's parents today.
"I would say, 'Thank you, because you gave me such a wonderful gift, and you gave me another chance to live,'" she said. "I feel bad because their daughter died at such a young age, but now a part of that girl is living inside of me."
Just two months ago, Shelby's life was very much in doubt. Diagnosed with restrictive cardiomyopathy, a condition in which heart muscle stiffening prevents the chambers of the heart from properly filling with blood, Shelby needed a heart transplant to stay alive.
"When they told me, it was a total shock," Bea said. "This kid had never had a heart problem as far as we were concerned, and from one day to another she needs a heart transplant."
The grim diagnosis was the latest calamity in a young life already marked with illness. Stricken with severe asthma when she was just under a year old, Shelby suffered from chest pains and wheezing most of her life.
She couldn't exercise or take part in any sports, though she desperately wanted to. The condition also impeded her growth, so Shelby was always much shorter and thinner than her classmates at McVey Elementary School.
She suffered one of her worst asthma attacks on Thanksgiving day, a portent of more bad things to come. "After the asthma attack, we ended up in the hospital," Bea said, noting that just days earlier Shelby had visited a pulmonary specialist for a battery of tests. "On Dec. 2, we went back to the pulmonary specialist, and she told us that the X-rays showed [Shelby] had an enlarged heart."
Shelby was admitted to the intensive care unit at Winthrop Hospital, and after two days was transferred to Columbia University Medical Center, part of the New York-Presbyterian system renowned for its cardiology department. "They weren't 100 percent sure if it was one heart problem or another, so they ended up having to do a two-hour MRI, and with that they showed she had restrictive cardiomyopathy," Bea said. "There's no cure for it except a heart transplant."
Shelby took the news hard. "I was crying because I couldn't see my friends and I couldn't go back home," the fifth-grader said.
For the next several weeks her hospital room became her new home, as she was placed on a national registry for organ donations. "You think you are going to wait forever for a heart," Bea said. "How could you sleep? I would pace around and around the floor. I would cry while she was sleeping because I never wanted to cry in front of her."
And so they waited through the holidays, a particularly rough time brightened only by loads of gifts from well-wishers and a visit from New York Yankees captain Derek Jeter, until finally a heart arrived.
"She called all her friends from East Meadow while she was crying that there was a heart for her," Bea said of Shelby's reaction.
With the surgery a success, Shelby made a remarkable recovery, and was out of the hospital in a little over a week. But her quick exit only began part two of the arduous battle. An outspoken youngster who one day hopes to perform on Broadway, Shelby will have to take some 30 pills a day for the rest of her life in order to keep her body from rejecting the heart.
Since she's taking medicine to suppress her immune system, she won't be back in school until next year, to avoid any chance of contracting an infection that could compromise her recovery.
Meanwhile, Bea and husband Orlando, who works for the Otis elevator company, are just beginning to realize the financial implications of Shelby's surgery. Her two-day stay in Winthrop came to $18,000, the transplant alone cost $300,000, and the family estimates that the the total bill for her treatment at Columbia will reach $500,000 to $750,000.
Although Bea figures that Orlando's insurance will cover most if not all of the expenses, she worries about the future. "Most insurance plans have a $1 million or $2 million spending cap, and I'm afraid we'll go over that," Bea said. "These kids, for whatever reason, they wind up in the hospital for other things. That's going to be my concern."
So far, the community has been very supportive. "East Meadow has been incredible," Bea said. "It's been unbelievable. I don't even know where to start thanking people."
Maryanne Maciura, a crossing guard near McVey Elementary School, organized a bowl-a-thon benefit Feb. 8, with the hope of raising between $2,500 and $5,000 for the Cabans. "I knew that something had to be done," Maciura said, "and by doing this it would open up other things for the family."
Anthony Sereno, of East Meadow, was present at the fund-raiser and helped secure donated items to raffle off. "Kids are precious," Sereno said. "When I hear things like this, whatever I can do, I'll do it."
