It was all so last minute. A phone call early on a Sunday morning. A five-hour drive to the Transplant Center for Children at Georgetown University Hospital in Washington D.C. But this was the chance to save the life of a 5-year-old boy.
Devin McQueen was a boy who couldn't eat. He was born with almost no small intestine. He was rushed to Georgetown University Hospital on the chance that he would be chosen to get a new small intestine that had become available.
The transplant surgery itself came with all kinds of dangers. Rare and complex, in the 1990s the survival rate was less than 50 percent. But it was Devin's only hope.
Devin's biological parents both had a history of drug abuse and were unable to cope with his illness. He was left in the care of a hospital in Newark, N.J., where Colleen McQueen is a pediatric intensive care nurse.
"My wife fell in love with Devon," Derrick McQueen said.
"He was 13 months old when we met him," recalled Colleen McQueen. "It was Dec. 1, and he had already been bounced back and forth between the acute hospital and the long-term hospital three times since October."
She convinced her family that he needed a home for Christmas. She said she wanted him to have a normal Christmas because she didn't think he would live that much longer.
Derrick McQueen, a pediatric intensive care doctor, had his reservations.
"I was concerned we'd all get attached to him, and there is a significant risk of mortality with this disease," he said. "I was against it."
But within four months, Derrick and Colleen McQueen had adopted Devin. They kept him alive with intravenous feeding, a process called TPN. But TPN can cause liver damage and leave patients vulnerable to life-threatening infections.
Eventually doctors told the McQueens that Devin's only option was an organ transplant -- a new small intestine. But even with their medical background -- or perhaps because of it -- the McQueens initially had reservations. Fewer than 1,000 small intestine transplants have been done in the world, and any transplant surgery has its risks.
"We did not want him to die that way," Derrick McQueen said. "With tubes and lines and everything. If it happened that he was not going to make it, we wanted him to be playing and swimming and riding his bike the day before."
"The road to recovery is very big," Colleen McQueen said. "What happens if something happens, even though we chose this path trying to save his life?"
But after meeting the doctors at Georgetown University Hospital, and talking with other families who had been through the process, the McQueens had Devin placed on the waiting list for an organ. And the wait began.
For months, Devin went to school, played baseball and spent time with his family. But he also endured fungal infections in the line that supplied his vital nutrition, and his liver started to fail.
When the McQueens received the call that an organ was available, there was a hitch. Devin was not the first in line.
"We were backup for the organ," Colleen McQueen said, but the family headed to Washington because "they wanted to have us here in case Devin would be able to get the organ."