Jul 19, 2017, 1:07:11 PM CDT Feb 5, 2024, 1:19:55 PM CST

A brave girl overcomes a rare disease & gives back

Brentlee receives lifesaving care for the treatment of a rare gastrointestinal disorder

Brentlee sitting down holding a baby picture of herself Brentlee sitting down holding a baby picture of herself

When Brentlee, age 5, was born, all signs pointed to a happy and healthy baby. Her mother Amber carried her to full-term, her delivery went smoothly and she scored great on the Apgar assessment often performed on babies at birth. It wasn’t until she began having difficulties feeding that her mom first suspected something may be amiss.

“She was seemingly healthy,” says Amber. “But, I began to get more uncomfortable with how bad she would choke while she was eating.”

Her pediatrician in their hometown of Athens, TX, didn’t seem too concerned initially, but during a routine visit, Brentlee was running a fever so her doctor suggested they visit the local emergency room for a routine work up.

“She happened to choke while we were in the ER, which got the attention of several physicians and nurses in the ER,” Amber says. “After they took an abdominal X-ray, they told us she would be headed to Children’s Health℠ and began the process to transport her to Dallas.”

Brentlee was immediately admitted to the Level IV NICU, where she was diagnosed with Necrotizing Enterocolitis, a condition more commonly seen in babies born prematurely that causes tissue in the intestines to die off. Unfortunately, an initial round of antibiotics didn’t seem to help, and on her third night in the NICU, she was rushed into emergency surgery to repair her perforated bowel.

Surgeons removed almost half of her small bowel, or small intestine, and fitted her with an ileostomy. Brentlee spent the next three and half months in the NICU battling infections and malabsorption issues before going home at exactly four months old.

Since then, Brentlee has had her fair share of challenges. Since she is missing the bowel that absorbs water, she tends to get dehydrated quicker than most children her age and has a lot of abdominal pain. She has been hospitalized six times since her initial NICU stay and has had several routine endoscopic procedures at the Gastroenterology clinic to monitor her condition and progress.

She has also worked closely with the Intestinal Rehabilitation Center at Children’s Health, the only one of its kind in North Texas. Under the leadership of Nandini Channabasappa, M.D., Director of the Intestinal Rehabilitation Program within the Division of Pediatric Gastroenterology at Children’s Health, the interdisciplinary team of health care professionals provide integrated, on-going care for patients with complex intestinal orders, like Brentlee, supporting both their inpatient and outpatient needs.

Through it all, however, Brentlee remains unafraid in the face of her medical issues, which her mom credits to the tremendous team at Children’s Health...and her fascination of medical dramas like “ER,” “Chicago Med,” and “The Night Shift!” Amber says that even for minor issues, they often make the 90-minute drive from their home in Athens to Children’s Medical Center Dallas because of the relationships they have built over the years.

“Children’s saved my little girl’s life on more than one occasion,” she says. “Why would I ever trust anyone else with her care?”

Brentlee’s family has been active in giving back at Children’s Health and started an organization called Dallas NICU H.O.P.E. (Helping Other Parents Endure) that helps support families of NICU patients going through similar situations they found themselves in just six years ago.

“We host a Thanksgiving feast in the NICU for families and staff each year and make sure that each baby and their parents receive a Christmas gift during the holiday season,” says Amber.

Today, Brentlee enjoys being outside, roller skating and trying to keep up with her older sister.

Looking back on Brentlee’s journey, Amber says the biggest thing they have learned throughout each challenge is to simply have faith, let the experts do their work and focus on their child.

“We knew she was in the best hands possible, which helped alleviate a lot of our own fears about her health and allowed us to just focus on supporting Brentlee through each step along the way,” she says. “I often think what would have happened if we hadn’t ended up at Children’s, and I thank God every day that we did.”

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condition, dehydration, infant, intestine, NICU, US News, USNWR

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