The blessing of persistence: Brenna’s story
According to Krista, her daughter Brenna is the goofiest, happiest child. She loves playing with her younger brother and older sister, boating with her best friend and enjoys any activity involving animals. Cheerful and constantly smiling, she may sound like your typical nine-year-old. But, there is a reason Krista considers Brenna to be her hero.
Born with Tetralogy of Fallot, a rare and complex congenital heart defect that causes oxygen-poor blood to flow out of the heart and into the rest of the body, Brenna was a fighter from day one. At the time, Krista didn’t know just how much of a fighter her daughter would need to be. Brenna’s health complications were just beginning.
Brenna not only faced a congenital heart defect in infancy, but also several gastrointestinal issues that required specialized treatment. Chronic constipation, gastroesophageal reflux disease (GERD) and gastroparesis are among the many hurdles that Brenna and her family have had to overcome. GERD is a chronic digestive disease that occurs when stomach acid flows back into the esophagus, causing acid reflux and heartburn. Gastroparesis is a condition in which poor stomach muscles prevent the stomach from emptying properly, causing nausea and vomiting, as well as problems with blood sugar levels and nutrition.
For several years, Krista sought help from various physicians until it was determined that Brenna needed more invasive testing for her motility issues. The need for this testing meant that the family had to take a trip out of state to see a motility specialist. That is, until Krista found out that this specialized service is now offered right here in Central Florida.
“It was truly serendipitous how we were connected to The Motility Center at Arnold Palmer Hospital,” says Krista. “My family is very involved with a local chapter of the national charity Mended Little Hearts. I was meeting about it with the administrator of the Arnold Palmer Hospital Heart Center, who mentioned that The Motility Center had recently opened. I went straight home from the meeting and made an appointment for the following week!”
The only place of its kind in the Southeastern United States, The Motility Center at Arnold Palmer Hospital provides testing, consultative services and treatment of motility disorders for infants, children, adolescents and young adults. Led by Dr. Shaista Safder, The Motility Center offers comprehensive treatment plans that involve medication, nutrition counseling, behavior modification, surgery and various therapies.
Brenna received an array of services through The Motility Center, including a colonoscopy and an inpatient colonic motility study. These tests, along with several outpatient sessions, have shown a need for genetic testing to determine a specific overarching diagnosis for Brenna’s various gastrointestinal complications. She is currently awaiting this testing, but for now, it has been determined that Brenna has a redundant colon and she has been prescribed appropriate medication to help her better manage the condition. After years of being told that Brenna was withholding her stool, Krista now feels closer than ever to specific answers and better treatment that does not involve placing the blame on her daughter.
“Brenna has seen some great doctors in her life, but Dr. Safder is by far the best,” says Krista. “She is so kind and compassionate and answers any questions honestly and thoroughly. She is the first of Brenna’s many physicians that has truly been committed to finding the diagnosis for all of her underlying symptoms. She is the epitome of what you want in your child’s physician, and has been an amazing advocate for my daughter.”
Since hearing that her motility issues are not her fault, Brenna is not only relieved, but her self-esteem has increased and she is less upset when “accidents” happen. Her eventual major diagnosis will further improve Brenna’s daily quality of life and will help provide answers for other related health concerns. More than anything, Brenna’s experience at The Motility Center has provided her family with hope for her future.
“At The Motility Center, we have received more answers in a few short months than we have in years,” Krista explains. “I do not blame the other physicians for the delay in appropriate diagnosis. I just know that our journey was supposed to lead to Dr. Safder because she is the best fit for our family. I know that our time at The Motility Center will lead to clearer answers, better treatment and a better life for our Brenna!”
To schedule an appointment, or for more information on The Motility Center, please call 321.841.9891 and ask for the Office Manager or visit arnoldpalmerhospital.com/kidsdigestion.
How motility studies offer new hope for kids with gastrointestinal disorders
Apr 15, 2017