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.
'On Deck' for a Lifesaving Organ Transplant
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."
This was the fifth time they had set out from their home in New York because of one of these phone calls. The first four times the donor organ was either compromised or went to another child. This was the closest they'd come so far, but disappointment could happen again.
Dr. Stuart Kaufman, a pediatric gastroenterologist, explained the situation to the McQueens.
"I was trying to think of that baseball term -- on deck or whatever," he said.
And that meant that somewhere else in the building there was another child waiting for that same small intestine. The decision would come down to whose blood was a better match for it.
They didn't know yet, because that organ was still several states away.
Earlier in the day, a member of the Georgetown transplant team, Dr. Cal Matsumoto, rushed from Washington, D.C., to retrieve the organ from another state. He carried with him blood samples from Devin and the other patient.
"They mix the blood there and with the donor, and whichever blood is OK and does not have an adverse reaction to the donor blood, that is the patient we will use," he said.
Left unsaid is that the intestine was suddenly available in that other state because a child had died. A child whose identity and story remains unknown.
As they waited back at Georgetown, the McQueens wanted to hear that they would get the organ. But the room they sat in was haunted by other feelings.
"Your emotions are a little bit torn in every direction," Colleen said. "I am going to be devastated if we leave here today and we are not No. 1, but I am going to leave here feeling just as bad if we do get it for the family that got turned away today. There are so many emotions. And that poor donor family. You will spend the rest of your life being thankful that they chose really to save your kid's life. And they are at a time of sorrow."
'Perfect Organ' Means Joy for One Family, Heartbreak for Another
While the McQueens continued to wait at Georgetown, by 6:30 p.m. Matsumoto had removed the small intestine from the donor.
"The patient is being kept alive artificially through the use of a ventilator," he explained. "At an agreed upon time, we stop the heart, flush the organs with preservation liquids and put ice on all the organs all at once."
The clock starts ticking then, for how long an organ can be outside the body. "For intestines, we try to get it into another person, another human being, within 10 hours."
By 8:30 p.m., Matsumoto was heading back to Washington. The McQueens had hoped to hear something, and the wait was agonizing.
I was doing better this afternoon," Colleen McQueen said. "Right now, I am physically ill."
The small intestine arrived in Washington shortly after 10 p.m. And soon after, the test results arrived showing which patient would receive the organ.
Devin's blood was more compatible with the donor's, so he would get his new small intestine.
"You're going," Matsumoto told the McQueens, who were stunned by the news.
"We are going to get him downstairs and get him transplanted," Matsumoto said, as Colleen gave in to a sob. "This is good news."
"This is why you came down even if you are back up," Dr. Thomas Fishbein, who led the transplant surgery, told the McQueens. "This is a perfect organ for him. There's a lot that is still left up to, you could call it fate or science, that we don't yet understand that may impact the outcome from here on out, but you couldn't get a more perfect match for an organ for what we are looking for, with everything we know about how to try to avoid rejection of organs for this little guy."
Soon Devin was wheeled downstairs to the operating room. The McQueens were still trying to absorb the news.
"I thought we'd be at a hotel room tonight," Derrick McQueen said. "It's very scary."
The procedure takes between six to eight hours. First Fishbein had to remove Devin's remaining small intestine. Previous surgical procedures to try to make it more functional have left scar tissue to work around, but in under an hour it was out. And 50 minutes later the new intestine was in. For Fishbein, it was the moment of truth. As the clamps were released, the intestine's coils swelled and turned a healthy pink as Devin's blood flowed through them.
It had been eight hours since the organ was removed from the donor and 18 since the McQueens got that phone call.
"He's got a full, really beautiful length of bowel and it's a really good, good quality organ," Fishbein told the McQueens. "You can't get better than that."
"We feel a little better having gone through the actual surgery," Derrick McQueen said while waiting to see Devin in the pediatric intensive care following the transplant. "That's one big hurdle out of the way. There's still more to come, but that's one of the bigger ones."
One of the hurdles is organ rejection. Surgery is one thing, the risk of organ rejection another much more dangerous one. While the chance of survival a decade ago was less than 50-50, today, according to Fishbein, "we have 90 percent survival rates after the transplant and the majority of those patients will go on in the long-run and have good function."
Intestine Transplant Patients Face Complications
The difficulty has been the fact that transplanting an intestine means also transplanting the billions of germs and microorganisms that go along with it.
"Each human being is a completely individual ecological system," Fishbein explained. "These microorganisms help you digest your food and get your nutrition, but at the same time they are lethal if they are not in a controlled environment. ...The most radical way to change your equilibrium is to pick a whole ecosystem up from one human being and retransplant it with an organ into another human being."
Today's enormous improvements in survival rates have come from having a better understanding how to prevent rejection.
"We used to flush all the organisms out, and we no longer do," said Fishbein. "And we have new drugs that have evolved over the last decade that allow us to more specifically refine a cocktail of medications just for this organ."
Devin McQueen's recovery to this point has been mostly smooth.
"Every day he just progressed and progressed and progressed, like 48 hours he was up in a chair, 72 hours he was walking," Colleen McQueen said.
But then there was a significant bump in the road. Eight days after the transplant Devin complained of stomach pain. At first the doctors feared a puncture in the new intestine, so Devin was taken into surgery again. The intestine was fine, but they found a severe infection of the pancreas.
"A bad pancreatitis," according to Colleen. Some of the pancreas had died."
But luckily he quickly bounced back. A week later, he ate food, real food.
"He did great with it. He swallowed. He was comfortable with it. He had eggs and toast and oatmeal, and last night he had some dry pasta," Colleen said.
What milestone did Devin have to reach before he could eat?
According to Fishbein, the new intestine had to prove that it was working properly. "He made a nice poop, and then he got to eat."
About 200 people are on the waiting list in the United States to receive a small bowel transplant, but not all doctors and hospitals are aware that today's success rates make it an option for a wide variety of patients. Fishbein estimates that as many as 9,000 other people could benefit from the procedure.
Devin left the hospital to cheers by the nursing staff a month after the transplant. At first he and his family stayed in a local apartment to be close to the hospital and the transplant team. But recently they have packed up and headed home to New York's Staten Island.
Devin still has to be careful about infection, and he'll need medication indefinitely to fight the risk of his body rejecting the organ he received. But that medicine can go down with juice and with toast and with turkey sandwiches and ice cream and everything else the kid who couldn't eat has been waiting for.
Because the wait is over.