By GEORGE BRYSON
Anchorage Daily News
June 23, 2007
Other critically ill children wait there too, living as normally as possible until the donor organs arrive that might save them. They even have their own school, and that school has an annual prom.
So Shawn's mom, Trista Stockwell -- who stays at the facility with him -- wasn't surprised recently when Shawn had a good time at the prom. After all, he knew almost every kid there. He's been at the school longer than anyone.
"We now hold the record for the longest consecutive stay," Trista said last week. "It's not necessarily the record I was going for."
A year and a half ago, when Trista and her husband were first discussing Shawn becoming a heart-transplant candidate at Stanford, a staff member there told her she needed to really consider the fact that her son might wait there up to a year.
"And I thought, 'No way. For most kids it's six months,'" Trista recalls now.
But for want of a suitable heart, Shawn continues to wait.
According to the American Heart Association, there are more than 2,000 heart transplants a year in the United States, and about two-thirds of them are destined for adults between the ages of 35 and 65. Finding a heart for a child can be problematic, since the organ has to be the right size.
Shawn Stockwell needs a heart from a donor with O-type blood who is roughly 6 to 10 years old. That rules out a lot of potential hearts. But he can also be superseded by anyone whose health is more critical than his - though his is dire enough.
Born with half a heart (the left side never developed fully due to a congenital defect known as hypoplastic left heart syndrome), he's undergone six major heart surgeries and about 30 minor operations. Four years ago he was also diagnosed with protein-losing enteropathy (PLE), a rare disease that starves the body of the fuel required to grow.
As he began to lose weight, his family learned that PLE has a 65 percent mortality rate within five years of onset. Since then, the time has been ticking down.
But a successful heart transplant could eliminate the PLE, as well as the heart problem. So a year ago last spring, Shawn was accepted into the Stanford program and added to the national organ-sharing registry.
During his stay there, about 10 other children have undergone heart transplants, Trista says. Some of those patients waited at the facility for a donor heart for months. One critically ill boy was there less than a day.
Last December, it appeared that Shawn's turn had finally arrived. Trista received a middle-of-the-night phone call informing her that a donor heart suitable for Shawn was available in Sacramento, Calif. She and Shawn rushed to Lucille Packard and waited for its arrival. Then the transplant was suddenly called off. A last-minute examination revealed that the donor heart contained a defective valve.
So Shawn went back to school.
At one point last year, there were nine heart-transplant patients at Lucille Packard at the same time, all waiting in the queue. After Christmas, however, the residence began to empty out. Three children died within a week.
One of them, a friend of Shawn's named Felipe, developed a simple common virus that took his life, Trista said.
Their two families, including Shawn's visiting dad, George Stockwell (whose job keeps him in Eagle River) spent time together. The friend's father spoke only a little English, and he sought them out after the doctor told him there was no more hope.
"He told me, 'They've stopped the medicine. Felipe will be no more.' That's one of the saddest things I've ever heard in my life," Trista said.
Shawn's own health at Lucille Packard has gone up and down. Three weeks ago some of the numbers in his blood sample plummeted, and Shawn had to receive a series of infusions and remain in a hospital ward. Now he's doing better. Some days he feels so good Trista takes him to the ballpark in San Francisco to watch the Giants play. Then last week he went to the prom.
"When we got the invitation -- it was somewhat formal -- he asked me if he could have a tux," Trista said.
At first she was surprised. He'd never worn a tuxedo before. She didn't think Shawn was serious. But as the date of the prom drew closer, he asked her again. Then it dawned on her, Trista said.
"The thought that this may be the only time I ever see him in one."
She sprung for the tux.
"It was so bittersweet," she said. "He was very handsome. He's going to be a killer."
Scripps Howard News Service, http://www.scrippsnews.com
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