By Kathleen Schassler, The Middletown Press
POSTED: 12/17/14, 3:31 PM EST | UPDATED: 1 DAY AGO 0 COMMENTS
Navaiah Fulk, a student at Woodrow Wilson Middle School in Middletown, prepares to have an operation to replace her small intestine at MedStar Georgetown University Hospital on Dec. 5. Courtesy Kailani Gadlin
MIDDLETOWN>> A Middletown teen recuperating from transplant surgery celebrated her 14th birthday on Tuesday, 11 days after receiving a small intestine and a chance at renewed health.
“We are witnessing a miracle,” said her mother, Kailani Gadlin, on Wednesday.
Her daughter, Navaiah Fulk, 14, is no stranger to hospitals. Born with gastroschisis, a birth defect of the abdominal wall, she was just a year old when she underwent her first transplant surgery that offered a new liver and small bowel.
Babies with gastroschisis have intestines that stick outside of the baby’s body, through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also protrude.
The Centers for Disease Control and Prevention estimates that about 1,871 babies are born each year in the United States with gastroschisis.
Navaiah regained health after the 2002 transplant, remaining stable for about 18 months. In 2004, she developed chronic organic rejection of the small bowel, related to enteral tube feeding, according to Gadlin.
In January 2011, Navaiah’s health took another turn for the worse after a bowel obstruction required emergency surgery. A portion of her transplanted bowel was lost, Gadlin said.
For the past three years, Navaiah has spent most of her time in and out of hospitals, with little time at home with her family, according to her mother.
Last November, Navaiah was again added to list of the United Network for Organ Sharing, as the family awaited the news that recently arrived.
Navaiah was “strong and in great health” going into transplant on Dec. 5, said Gadlin, a Torrington native.
A student at Woodrow Wilson Middle School, Navaiah gets support from friends and staff at local schools and the larger community. While Navaiah underwent surgery, her mom took to social media to ramp up support for her young daughter. She requested that photos with the hashtag #teamnavaiah be posted on their Facebook page, Happy Hearts and Hugs for Navaiah.
Many in the community responded, including the city’s police department, helping to boost the teen’s spirits, her mom said. Care packages and photos from local students also have been mailed to Navaiah at MedStar Georgetown University Hospital’s Pediatric Transplant Unit, in Washington, D.C.
While Kailani stays with Navaiah in D.C., her husband, Larry Gadlin, remains in Middletown caring for daughters, Gabrielle, 10, and Rebecca, 7, both students at Farm Hill Elementary School.
The family continues to be positive as they deal with the stress of Navaiah’s 14-year medical journey, and the financial burdens that go along with it. Kailani Gadlin is unemployed and caring for her daughter, and Larry Gadlin, a New Britain native, is also out on workmen’s compensation while recuperating from shoulder surgery after an injury, he said.
Kailani Gadlin will remain in D.C. with her daughter, likely through February or longer, she said. Navaiah will continue to recuperate for several weeks at the hospital, and will then be transferred to a nearby Ronald McDonald House, where her medical team can “keep her close” while following the procedure protocol that involves regular blood infusions of cytogam, medication to support her immune system, several times a week, Gadlin said.
“She’s survived so much,” said Gadlin. “She’s a fighter.”
Her mother credits the girl’s “amazing” transplant team at Georgetown, as well as a “really great [gastrointestinal team] at Connecticut Children’s Hospital” in Hartford that has cared for Navaiah since birth, she said.
Gadlin sees some light at the end of the tunnle now, grateful knowings that there are “others that have it much worse,” she said.
To contribute to Navaiah’s transplant fund, visit gofundme.com/navaiah.
For updates and more, visit Navaiah’s Facebook page at www.facebook.com/HappyHeartsAndHugsForNavaiah