Sean's funeral was a pull-out-all-the-stops affair that Patrick described to friends as the boy's birthday, confirmation, prom, and wedding all rolled into one—every party he would never get to have. When it was over, Patrick tried to find comfort by throwing himself into work. Victoria, meanwhile, stumbled around the house, not knowing what to do with Sean's things, or herself. She plastered the walls with photos, put his unwashed blankets and clothes in ziplock bags to preserve his smell, and tortured herself with the thought that if only he had gotten a heart sooner, he would have lived.
Though there is never any guarantee that a patient will survive heart transplant surgery, Sean's doctors agree that his chances would have been better had he not spent such a long time on life support. But the length of his wait—more than four weeks—was typical. There are simply not enough organs for the patients who need them. Between 15 and 30 percent of the children who need hearts die waiting for them. "It's not a crisis of numbers compared to AIDS or cancer," says Elaine Berg, president and CEO of the New York Organ Donor Network, which procures organs for patients in the New York metropolitan area. "But it's a crisis because it's something we can solve. We don't need research or studies. We just need people to donate organs."
But not many people do. Though a Gallup poll shows that 95 percent of Americans support organ and tissue donation, according to the United Network for Organ Sharing, in 2006 the organs of only 8,024 people were actually transplanted after their deaths. Many intend to sign up as donors but procrastinate. Others insist on being buried intact. And a good number fear that if they get sick, doctors might try less hard to save them knowing that their organs could be put to good use. But the system is designed to safeguard against this possibility. The physicians caring for the patients are purposely not affiliated with the organ recovery teams. When a patient dies, the hospital is required by law to report the death to the local organ procurement organization, which then meets with the family to discuss whether the deceased may be a potential donor. "There's a strict separation of church and state," says Martin Woolf, of the New York Organ Donor Network. "There has to be. If this weren't an absolutely transparent system, then no one would donate at all."
It is especially painful, but especially important, to consider donating the organs of babies and children. "One of the many horrible things about our situation," says Patrick, "was knowing that for something good to happen to us, something tragic had to happen to another family." But the fact is that tragedies happen. When they do, parents may be too grief stricken to think clearly about the best course of action. That's why it is crucial to consider in advance what you would do if your child were to become a potential donor, and to realize that the benefits of donating extend not just to the recipient but to the donor family as well. "Losing a child is one of the most painful experiences in life" says Elaine Berg. "People feel so helpless. It can give them enormous comfort to know that something positive has come from their situation. We see it all the time. We're in the room with families when they're going through the unthinkable. When an older person dies, it is also comforting to donate. But when the person is younger, it can be even more meaningful, knowing your child is really living on."
We Hear You!