Family-centric and multidisciplinary care helps patient thrive

Khalea was born prematurely and spent the first weeks of her life in a local Neonatal Intensive Care Unit (NICU), where doctors confirmed the Down syndrome diagnosis.

After a month, Khalea was able to go home and soon after that, she started occupational and physical therapy at Mary Bridge Children’s. She was doing well until, at around 6 months old, her mom started noticing signs of bad reflux and had a sense that something wasn’t right. Khalea was miserable and constantly constipated. She couldn’t eat and when she did, it wouldn’t stay down for long.

Sotomayor voiced these concerns to Khalea’s doctors at another facility, who assured her that this was common for infants born with Down syndrome. They advised that it likely wasn’t anything serious and that switching Khalea’s food would help. Things didn’t get better and Sotomayor’s parental instincts kicked in — she needed help from a care team that would take her concerns seriously and help Khalea grow and thrive. “I felt like my concerns were being dismissed but I knew something wasn’t right,” she said.

That’s when Khalea’s pediatric occupational therapist, Melissa Beard, MSOT, OTR/L, C/NDT, and doctors at Mary Bridge Children’s stepped in.

“Melissa is really the one who got things moving,” Sotomayor said. Melissa sees Khalea for bi-weekly occupational therapy appointments at Mary Bridge Children’s and connected Sotomayor with Rohit Gupta, MD, with Mary Bridge Children’s pediatric gastroenterology department.

“Taking the time and listening to families is key. I firmly believe that ‘moms are always right’ and if they say something is wrong, then it is my obligation to go above and beyond to find the underlying problem,” Dr. Gupta said.

When Dr. Gupta saw Khalea, he immediately knew something was wrong and suspected duodenal webbing, a rare condition where a membrane obstructs and limits flow into the duodenum, part of the small intestine. He sprang into action, ran several tests, and soon discovered that Khalea was suffering from duodenal stenosis, a condition similar to duodenal webbing, but instead of a membrane causing the obstruction, the duodenum lumen is narrowed, restricting nutrients from passing through the digestive tract. Khalea had a near complete obstruction.

Dr. Gupta said the diagnosis is rare and typically discovered within a week of birth; however, in Khalea’s case it was even rarer because she wasn’t diagnosed until 13 months old.

The next day, Khalea was seen by Mary Bridge Children’s pediatric general surgeon, Stephanie Acierno, MD. Because duodenal abnormalities can occur with cardiac anomalies, Khalea also met with pediatric cardiologist, Christopher Bellotti, MD, to rule out additional concerns. Khalea was cleared and surgery was scheduled for the following week.

The technically challenging surgery was successful.

Khalea’s mom immediately noticed a difference. “She’s a whole different child,” she said. “I don’t know what I’d do without our Mary Bridge Children’s doctors. Khalea is thriving because of them.”

“She did phenomenally after surgery,” said Dr. Acierno. “She was drinking great and was starting to eat table foods with family.”

Today, Khalea is an energetic, mischievous 17-month-old who loves to play with her older brother and keep her mom on her toes. “She gives me a run for my money!”

Khalea has monthly checkups with Dr. Gupta and is seen regularly at Mary Bridge Children’s for a variety of appointments, including follow-ups with Dr. Acierno, and feeding, occupational, physical and speech therapies.

“I’m honored to be part of Khalea’s care team,” Dr. Acierno said. “She is a beautiful, happy girl who is curious and very affectionate. It’s been fun to watch her thrive and become much more physically active now that she’s getting better nutrition.”

Sotomayor credits the team of doctors and therapists at Mary Bridge Children’s for saving Khalea’s life. “They’re incredible. They listened to me, provided great care, and saved her life.”

Mary Bridge Children’s offers comprehensive care and wraparound specialty services throughout the South Sound so children like Khalea can live happy, healthy lives. The Mary Bridge Children’s experience is strengthened by our Care Promises that providers make to our patients and families.