Tim’s first few weeks of life were hard, on both him and his parents.
Born with various medical concerns, including a lack of the sucking and swallowing reflex—the instinctual way babies know how to suck and swallow milk—he had a hard time getting all the nutrients he needed. To help him thrive he was fitted with a gastric feeding tube (G-tube) that delivered formula directly to his stomach. But even with his tube, Tim still had problems with severe reflux. It puzzled his local doctors and pained his parents who were at a loss as to how they could comfort their son.
“It’s heartbreaking to have a child in pain and not be able to do anything,” says Tim’s mother Stephanie. “You feel so powerless.”
A step backwards
A year went by and Tim was growing at a typical rate, but his ability to hold down food went from bad to worse. Around 14 months his vomiting became serious—suddenly he couldn’t take more than a teaspoon of water without spitting it up. His parents took him to see a gastrointestinal specialist in their area, but no matter how many tests Tim went through nothing seemed to explain his condition.
The family spent the next month in a hospital where Tim underwent several tests and surgeries. Ultimately, his G-tube was replaced with a G-J tube, which bypasses the stomach and deposits formula directly into the small intestine. It was hoped that a new feeding method would prevent Tim’s vomiting and allow his parents to provide him with hydration and nutrition at home.
Though they were finally allowed to leave the hospital, the young boy was still far from being well. He was constantly attached to a pump that dispensed food, was often in pain and still threw up large amounts of bile. After more visits, the pediatric GI specialists that followed Tim determined he suffered from poor motility—meaning the muscles in his digestive system weren’t well coordinated—and advised his worried parents that this was his new “normal.”
Unwilling to accept this new “normal,” Stephanie reached out to a family friend and adult gastrointestinal doctor, hoping he could help guide her search for a second opinion. As her friend researched potential conditions and treatments for children with Tim’s symptoms, one name appeared again and again: Boston Children’s Hospital’s Samuel Nurko, MD, MPH.
With all the data pointing in one direction, Stephanie’s friend reached out to Dr. Nurko on Tim’s behalf and a few days later Stephanie and her baby were boarding a cross-country flight to Boston.
In search of answers
Considering how many tests and treatments her child had already been through, Stephanie was nervous about turning his care over to a new team of doctors. Who was to say they wouldn’t run the same tests and get the same inconclusive results? But after just one visit with Dr. Nurko and his team, Stephanie says those fears disappeared forever.
“The best way I can think to describe Dr. Nurko is that he’s the kind of guy you’d want to have brunch with. He’s such a warm, thoughtful person, and that comes across right away,” Stephanie says. “Instead of taking a look at Tim’s charts and telling me what the next steps were going to be, he listened to what my hopes and expectations were for his treatment. It was a wonderful surprise.”
To fully understand what Tim was up against, Dr. Nurko initially reviewed all the information that was available. He then performed an endoscopy, where a long, thin tube fitted with a miniature camera is inserted into the child and sends back images of the gastrointestinal tract for study. Dr. Nurko saw something that, up until that point, no one else had seen. Nurko believed he had discovered a jejunal intussusception inside Tim, which occurs when one portion of the bowel slides into the next, like the moving parts of a retractable telescope. When this occurs, the walls of the intestines press against one another, creating a blockage that can be very painful and lead to vomiting. Dr. Nurko suspected the child’s G-J tube was creating the problem, and if that tube was removed the problem would correct itself.
“As the mother of a chronically ill child, I had gotten pretty good about keeping my emotions in check. It’s just something you learn to do. But when Dr. Nurko said he may have discovered Tim’s problem, I burst into tears,” Stephanie says. ” To hear that with the right tube and monitoring he might get better was more than I had dared to dream for.”
Dr. Nurko performed a number of follow-up tests—including sophisticated tests of the motility of the boy’s stomach and intestine—to get a comprehensive view of Tim’s system, and removed his G-J tube. He then kept him in the hospital for a few days to see how he tolerated feeds through the G-tube. As Dr. Nurko suspected, without a G-J tube creating an intussusception, Tim started tolerating his formula much better. One week after their arrival in Boston, Tim and Stephanie were on their way to Logan Airport, ready to return home.
Continuing care, across miles
These days Tim is doing well. He’s has the occasional setback where holding food down becomes difficult, but for the most part he’s tolerating food and growing as expected. “He’s just a happy, mischievous little guy,” Stephanie says.
And while they’re safe and sound at home, Tim’s care is still supported through Dr. Nurko and his nurse Amy Sparrow. Although they are thousands of miles away, Nurko and Sparrow are working with the doctors in his hometown, actively following Tim’s progress and providing their expertise, to make sure he continues to thrive.
“Raising a child with special needs is tough. Sometimes it feels like you’re all alone,” Stephanie says. “So finding people like Dr. Nurko and his team, who are all so dedicated and devoted to their patients, is just incredible. For the first time in Tim’s life we feel like we are part of a team that is completely focused on supporting him. And it feels great.”
If you’d like more information about Dr. Nurko or Boston Children’s Motility and Functional Gastrointestinal Disorders Center please visit their website.