Alycia Levy loves brussels sprouts and tofu, but it isn’t her mature palate that makes the Silver Spring 8-year-old unique.
Doctors say she is one of the only people to have both survived a rare transplant and a medical procedure that was a result of a series of complications from that operation.
‘‘Her whole life has been pretty rare,” said Dr. Heidi Dalton, the director of the pediatric Intensive Care Unit at Children’s National Medical Center in Washington, D.C.
As their way of bringing attention to the need for donors, Alycia and her family walked in the National Cherry Blossom Parade with more than 30 others from the Washington Regional Transplant Community Saturday to celebrate National Donate Life Month.
‘‘It’s about being a help to other people that are sick and need transplants,” Alycia said Thursday.
‘‘She’s very mature for her age,” said her father, Michael Levy.
Alycia was born in July 1999 with a rare condition, an intestinal pseudo-obstruction that prevented the nerves in her small intestine from working. She was given intravenous nutrition for the first five years of her life, at times for up to 22 hours a day.
‘‘I had a big backpack,” Alycia said of how she carried around the IV.
Dalton, who worked with the Levy family during her most recent hospitalization, said many children are unable to tolerate IV nutrition for that long because of the chance of liver failure.
By 2003, Alycia was placed on a transplant list for both a small bowel to allow her to function without an IV, and a liver just in case hers failed.
‘‘Once she went on the registry, her condition didn’t deteriorate significantly,” said Alycia’s mother, Stefanie Levy, holding onto the green bracelet around her wrist that reads ‘‘Donate Life.” ‘‘It was nothing short of a miracle.”
After two false alarms, Alycia received her ‘‘gift of life,” a small bowel from a boy who ‘‘saved five people that day” by donating his organs, Stefanie Levy said.
El’Jay DeShield, a spokesman for Washington Regional Transplant Community, which includes Montgomery and Prince George’s counties, Northern Virginia and Washington, D.C., said on average, about 2,000 people are waiting for transplants in the area daily. Per week, two to three people die while waiting.
Michael Levy remembers his daughter giving him the ‘‘thumbs up” right before being wheeled into the operating room at Georgetown University Hospital to receive the transplant. It was Nov. 9, 2004.
For several months, Alycia was ‘‘the poster child for transplant success,” Stefanie Levy said, ‘‘and then, boom, a very unfortunate set of dominos fell.”
In April 2005, doctors found a virus in Alycia’s body that led to a 100-day stay in the intensive care unit. She eventually left to a standing ovation from her doctors and nurses.
But her time at home was short-lived. In January of 2006, scarring from her transplant surgery caused her new bowel to perforate, its contents spilling into her abdomen. Alycia went into sepsis, an inflammatory response by the body to a severe infection.
‘‘She was flooded, in essence. ... She was drowning,” Stefanie Levy said.
While at Georgetown, her parents were told of a last-minute option – a transfer to Children’s National Medical Center to hook Alycia up to an extracorporeal membrane oxygenation machine, or ECMO.
The machine, which is most often used for patients who have had operations with high bleeding risks, drains a patient’s blood through a catheter, and returns blood that has been oxygenated back into the body, Dalton said. Children’s is the only hospital in the Washington, D.C., area that uses ECMO in pediatric cases, a process that has become more common for use in children over the last decade. About 300 children, 100 adults and 800 newborns are put on ECMO each year, Dalton said.
‘‘She’s the only person, adult or kid, that I’ve ever heard of that had a small bowel transplant and was put on this kind of support,” Dalton said. ‘‘Certainly, the only one I know of that has survived.”
While at Children’s, Alycia also underwent a procedure that filtered her plasma, which along with the ECMO helped the blood vessels in her hands and feet that had clotted. ‘‘Her limbs were black during all this time,” Dalton said.
Alycia has not had any major procedures since, but still shows the effects. While at Children’s, she suffered a stroke and was left with no vision in her right eye and little vision in her left. She also lost the tip of one of her fingers on her right hand, and has never regained all of the function in her left hand. To compensate, she made herself right-handed.
She still has her blood checked every six months and has a teacher work with her on activities for the vision-impaired every morning at Forest Knolls Elementary School, where she is in the second grade.
Stefanie Levy said she and her husband were ‘‘adjusting to a new normal,” but described themselves as parents who were more cautious than most.
‘‘Every time she walks out that door, we think about all the scary things that could happen out there,” Stefanie Levy said. ‘‘But, we have to think that hope and trust have gotten us this far.”
Intestinal organ donation
About 100 patients receive small bowel transplants each year, and between 60 and 70 of those are for children age 18 and younger, according to Georgetown University Hospital. Of the more than 98,000 men, women and children on transplant lists nationwide, about 220 were waiting for intestinal organs as of April 7, according to data from the Organ Procurement and Transplantation Network (OPTN). A new name is added to the national waiting list for organs in the United States every 13 minutes.
The Washington Regional Transplant Community has someone answering calls about organ donation 24 hours a day. For more information, call 1-866-Be-A-Donor (1-866-232-3666), e-mail contactwrtc@wrtc.org, or visit www.beadonor.org. For more information about April as National Donate Life Month, visit www.organdonor.gov.
