I don’t read many nice stories in the newspapers these days but I had to share this one. Also attaching the link to the family’s blog:
By Dan Goldberg/The Star-Ledger The Star-Ledger
on June 07, 2013 at 8:30 AM, updated June 07, 2013 at 8:32 AM
Nine-year-old to walk 5K after outpacing life-threatening illness
Devin was barely a year old when Colleen McQueen first saw him in December 2004. As a nurse in the pediatric intensive care unit at Newark Beth Israel Hospital, McQueen regularly treats very sick children, but Devin was different.
“He didn’t have a blanket,” she said. “He didn’t have an article of clothing, he didn’t have a toy, he didn’t have anything for comfort.”
Devin was a ward of the state, his parents having abandoned him into the hospital’s care. Devin also was suffering from a rare and potentially life-threatening disorder called short gut syndrome.
McQueen swore if the baby survived three more weeks, she would bring him home for a real Christmas.
“Look at him, how could I leave him in a hospital to die?”
Her husband, Derrick, a pediatric intensivist at Newark Beth Israel, said he thought his wife was out of her mind. He didn’t want her, his two children or himself becoming too attached to a child who might not have long to live, he said, but his wife insisted.
“You think I need my head examined, don’t you?” Colleen McQueen said during a recent interview. “Okay, let me show you something.”
McQueen walked to the back of her Staten Island home and fetched a photo album. She opened to Devin’s baby pictures. There he is at that first Christmas, almost nine years ago. He’s a happy-looking baby with big brown eyes and a bigger smile. He’s playing with the only presents he had ever received.
“Look at him,” Colleen McQueen said dotingly. “How could I leave him in a hospital to die?”
She couldn’t, and he didn’t. This Sunday, against all medical odds, Devin will walk with his adopted dad at the third annual NJ Share 5K Race, which raises awareness for organ donation.
The bright green T-shirt he plans to wear reads “Devin’s Got Guts” because four years ago he had a successful small intestine transplant, which saved his life.
Short gut syndrome occurs when a child is born with missing or malfunctioning pieces of the small intestine.
Colleen McQueen, left, talks with her son Devin McQueen, 9, about his homework. Devin has short gut syndrome, a condition in which the bowel is not as long as normalPatti Sapone/The Star-Ledger
“The length needs to be there because that’s where the digestion and absorption of nutrients takes place,” said Ona Fofah, chief of neonatology at University Hospital in Newark. “Any time you have a child whose bowel length is shorter than it should be, the child cannot grow properly.”
It is a condition that affects about 3 percent of all babies, and the severity varies depending on how much gut is missing, Fofah said.
When Colleen McQueen brought Devin back to Newark Beth Israel after New Year’s Day 2005, doctors warned against becoming too attached. Devin’s chance of survival remained small.
Devin spent the first year of his life between Children’s Specialized Hospital in Mountainside and the pediatric intensive care unit at Newark Beth Israel. He never touched snow, he never felt sun. He had spent so much time in hospital cribs that he never learned to crawl.
Colleen McQueen worried Devin would not get the care he needed if he remained a ward of the state.
So she fought to gain custody.
Home for christmas
“Once he came home (for Christmas), it was a no-brainer,” Derrick McQueen said. “We all fell in love with him. I guess we are a little crazy.”
Even with a central line in place, even with frequent trips to the hospital, Devin learned to play baseball and basketball.
“He is a full-of-life kind of kid,” Derrick said. “We totally enjoyed that and embraced that.”
The McQueens turned their home into a mini intensive-care unit. Devin, of course, changed more than just the home.
His adopted siblings, now 19 and 16, loved Devin as a brother. But they lost some of the attention of their parents, who had to miss events when Devin was sick. When the McQueens traveled, a suitcase full of medical supplies went with them.
Derrick and Colleen McQueen were on constant heightened alert, watching for the slightest sign of illness that could harm or even kill their son.
And though Devin did better than most could have hoped, he was still a very sick little boy. He lived on total parenteral nutrition, which delivers all nutrients intravenously, bypassing the stomach and normal digestive process.
It keeps babies like Devin alive, but it damages the liver because there is no other organ to aid with the digestion and absorption of fats and proteins, said Sharron Burke, a neonatologist and director of the infant and toddler rehabilitation program at Children’s Specialized Hospital in New Brunswick.
The liver is overworked.
“The protein content in TPN eventually makes it difficult for the liver to keep metabolizing the protein,” Burke said. “Also, the fat content creates a fatty liver.”
Fofah said it was “remarkable” for a child to survive as long as Devin did on TPN.
In 2007, when Devin was about to turn 4, his primary care physician told Colleen, “I have nothing left to offer you.”
She suggested trying Georgetown University Hospital in Washington, D.C., where there was a transplant team that might be able to help.
The surgeons were equally blunt: Devin has very little time, they said.
Intestinal transplants are very risky, particularly for children. The five-year survival rate is less than 50 percent, doctors told the McQueens, but there was no choice.
An appetite for life
Once again, Devin exceeded expectations. Only 10 days after surgery, and after beating back a case of pancreatitis, he demanded eggs and toast. No one really knows why. He had never tasted eggs and toast. He had never really tasted anything. Maybe it sounded like what grown-ups eat.
Colleen McQueen thought it best to start with oatmeal, something a little easier to chew and swallow, but she ordered both. Devin ate every last bit, she said.
Now, steak, macaroni and cheese, pizza, carrots, hard food, soft food, healthy food, junk food, Devin loves it all. And he loves the Yankees and the Nets. His bedroom has posters of Robinson Cano, and autographed baseballs. In every way, he seems like a normal kid.
How long this will all last, no one really knows. He has had 25 colonoscopies since his transplant. Because of the immunosuppressants he takes to keep his body from rejecting an organ that isn’t really his, Devin is at heightened risk for infection. An infection can be life-threatening.
Colleen McQueen said she has long stopped asking for Devin’s prognosis.
She now feels it is easier not to know.
Against the advice of doctors, the McQueens have become attached.