April 17, 2009 -- A small intestine transplant remains a rare procedure. Just 1,000 have been done in the world, and Georgetown University Hospital -- a leading center for the procedure -- has done just 100 in the past five years.
When "Nightline" began working on a profile of Dr. Thomas Fishbein and Georgetown's new Transplant Center for Children, we didn't want to just interview a patient after the fact. We wanted to follow a family through the entire process, a process that we understood could take months.
Like the families, we didn't know how long they would have to wait to get that phone call saying a new small intestine was available or what the outcome would be, so we decided to follow two families.
Devin McQueen was born with "short gut syndrome." He essentially had no functioning small intestine, which made it impossible for him to get any nutritional benefit from eating. He was tied to an intravenous feeding system 12 hours a day to stay alive.
He and his parents, Derrick and Colleen McQueen, allowed our cameras to be flies on the wall during perfect summer days when he played baseball and went swimming with the neighborhood kids, when he was raced to a Newark, N.J., hospital with a potentially life-threatening fungal infection and when the doctors at Georgetown worried that he might also need a liver transplant.
The second patient we followed was Gabrielle Phillips. Now almost a year old, when she was born last May her parents, Nina Vega and Jermel Phillips, thought everything was fine. Within 24 hours, however, it was apparent that Gabrielle was deathly ill. For an unknown reason, during birth her intestines had become twisted and had died.
"My whole family just were devastated," said Vega.
Immediate surgery to remove most of her intestine saved Gabrielle's life, but since then she has required the same intravenous nutrition -- TPN -- that McQueen relied on. Within months of birth she was listed on the transplant waiting list. In her case, however, the TPN has caused liver damage and she is now listed for a liver transplant as well as a small intestine.
Waiting for a Transplant: 'It Will Happen for Us'
Not all doctors and medical centers are aware that a small intestine transplant can be an option for patients like Gabrielle. But her doctors were familiar with the work Fishbein was doing with intestinal transplants and sent her to Georgetown for evaluation. When she was placed on the wait list, however, this presented a problem. Transplant patients need to be within six hours of the transplant center, and Gabrielle and her family are from Arizona.
Leaving their families and support system behind, the couple moved with Gabrielle to Maryland during the fall. Older brother Eric stayed behind in Arizona to keep up with school and his friends.
"As much as I love my family and want to be there, it's not about me," Vega said. "It's about her, and what's best for her."
Vega and Phillips continue to wait for that phone call to come. More than 200 people are wait-listed for a small intestine transplants, three-quarters of whom are children. And overall, some 100,000 people in the United States are waiting for some sort of organ transplant. Yet there have just been 2,300 done so far this year.
The day after McQueen received his transplant, Gabrielle had a regular check-up at the transplant clinic at Georgetown. When told that the other family "Nightline" was following had received their transplant just the day before, Vega said, "I am happy for them. It gives you hope that it could happen soon. It's happening for other people, so it will happen for us, too."
Gabrielle continues to grow, but last week she landed in the hospital needing a blood transfusion. The waiting for them is the hardest part. Until that phone call comes, Vega remains philosophical: "She's taking us on a little journey and taking us out to see different things."
"And we're along for the ride," Phillips added.
April is national donate life month. For more information on organ donation, visit: