An Athens child continues to receive treatment two years after she received a fecal microbiota transplant at Texas Children's Hospital in Houston.
But doctors don't know why she is experiencing so much pain.
“We're very pleased with the outcome of the transplant,” Brentlee's mother, Amber Stockard, said. “We were hoping Brentlee would live a normal life. She has good days and bad days. Some days, her pain is unbearable.”
The family sought out Dr. Samuel Nurko, a pediatric gastroenterologist at the Boston Children's Hospital.
“He was referred to us by families I met at the children's hospital in Dallas,” Stockard said. “We are hoping he can find the source of Brentlee's pain.”
Stockard said they traveled to Boston in 2018 for testing.
“They were very invasive and painful tests. I hated to see Brentlee endure all that pain. She is the strongest person I know. She has gone through things some adults would not be able to handle. She inspires me every day.”
Brentlee Stockard, 7, was born with Necrotizing Enterocolitis (NEC) — a rare disease. She struggles each day to relieve the pain. For that reason, in 2017, Brentlee was featured on CBS Channel 11 as a “Warrior.”
The Athens Daily Review has followed Brentlee's progress since she was 3 weeks old. She was taken by helicopter to Children's Medical Center in Dallas, where she was diagnosed with NEC. The baby spent three and a half months in the children's hospital, where she had surgery to remove half her bowel.
According to the WebMD website, the disease affects one in 2,000 to 4,000 births. It can happen in any newborn baby, but it’s most common in premature babies who weigh less than 3.25 pounds.
Doctors aren’t sure what causes NEC. They do know that premature infants have lungs and intestines that are weak and less mature than those of full-term babies. That means their bodies don’t move blood and oxygen around like they should. They also have problems breaking down their food and fighting infection.
Brentlee was a full-term baby at 39 and a half weeks.
Doctors have not been able to say why her daughter has NEC, her mother said. When she was 5, Brentlee received the fecal microbiota transplant. At the time of the procedure, Stockard said that her daughter received the transplant after developing C. difficile colitis (C. diff) from long-term use of antibiotic medications.
According to the FMT Foundation, the purpose of such a transplant is to replace good bacteria that has been killed or suppressed — usually by the use of antibiotics — causing bad bacteria, specifically C. diff., to overpopulate the colon.
The infection causes C. diff. colitis, resulting in often debilitating and sometimes fatal diarrhea. But the fecal transplant has also had promising results with many other digestive and auto-immune diseases, including Irritable Bowel Syndrome, Crohn’s Disease and Ulcerative Colitis. It has also been used around the world to treat other conditions, although according to the Mayo Clinic, more research in other areas is needed.
“Fecal transplant is a low-cost, low-risk, highly-effective treatment,” the FMT Foundation website shows. “It is not currently covered by most insurance companies, as it is still classified as an experimental treatment.”
In 2017, Stockard said that since the procedure is relatively new, not much data is available to support how effective the treatment will be for Brentlee or her prognoses.
Because her mother knows too well what families with sick children experience, she started the Dallas NICU H.O.P.E. Program — an organized group of families who have endured neonatal intensive care units.
“The H.O.P. E. program is to help these families around … Thanksgiving and Christmas,” Stockard said. “We know how difficult it is for families to cook Thanksgiving or give their child a Merry Christmas. We just want to make it a little easier. It's just a way to make sure they all have happy holidays.”