All his life, Ethan Datsis, 17, was a happy kid. Although he has autism spectrum disorder (ASD) and is non-verbal, his beaming smile says it all. When Ethan smiles, everyone else follows suit. In late July 2016, his parents, Ellen and Kurt, knew something wasn’t right when their typically bubbly son started crying and trying to make himself vomit. Then, Ethan to start hitting his head – a behavior he had never done before. His providers weren’t sure whether to attribute his behavior to acid reflux or ASD.
“Deep down, I knew this wasn’t the Ethan we knew growing up. Ethan is non-verbal, but he never self-injured before. I just knew something wasn’t right,” said Ellen, of York, Maine. “The doctors here at home thought it might be acid reflux or another common stomach condition. The only thing that would soothe him was going for long drives in the car. Sometimes we’d spend up to 20-24 hours a day driving Ethan around just to give him some relief.”
Over the next year, the Datsis’s made several hospital trips and received no definitive answers as to why Ethan was in such pain. In that same year, Ethan lost 50 lbs., a result of him eating less and less over time. They brought Ethan to York Hospital where he met Mark Salvatore, MD, a pediatric gastroenterologist at MassGeneral Hospital for Children (MGHfC) who was staffing a gastroenterology clinic in Maine that day.
“Because Ethan is non-verbal, we had to pay close attention to his facial expressions and behavioral patterns to figure out where his pain was located and what was triggering that pain,” said Salvatore, who also cares for pediatric patients in the Center for Celiac Research and Treatment at MGHfC. “I completely trusted Ellen and Kurt’s parental instincts when they said Ethan’s behaviors and symptoms were not related to his ASD, but as a result of physical suffering.’”
A battery of imaging tests later revealed an unexpected diagnosis. “I sat down to look at his imaging test with Dr. Katherine Nimkin, one of our radiologists, who spotted an abnormality in Ethan’s pancreas,” said Salvatore. “After very close examination, we realized he had an annular pancreas, which is almost always an incidental finding [discovered unintentionally] in Ethan’s age group.”
An annular pancreas is when the pancreas (a small organ near the small intestine) forms a partial or complete loop around the duodenum, or upper part of the small intestine. This can cause a blockage that results in difficulty eating and vomiting. In many cases, babies with an annular pancreas show symptoms shortly after birth. In children, teens and adults, symptoms are usually mild. This was not the case for Ethan.
From the moment Ethan became Salvatore’s patient, the mutual trust between provider and family was essential. Eventually, it became apparent that the Datsis’s might need to consider surgery to relieve Ethan’s pain.
“It was really a leap of faith to do the surgery,” said Salvatore. “There was no guarantee that it would help Ethan’s symptoms, but his parents and I were confident that we had explored every possible option. We were determined to keep going until we found out what was wrong. Ethan’s case caused me a lot of restless nights.”
On July 26, 2017, Ethan had surgery to address the intestinal blockage caused by his annular pancreas, performed by Allan Goldstein, MD, surgeon-in-chief at MGHfC. The results after surgery were almost immediate – no pain, no vomiting and a return of that glowing smile Ethan was known for.
“It was so wonderful to see Ethan feeling better after his operation. His parents no longer had to drive him in the car for hours to soothe him. Instead, they could enjoy having their son back,” said Goldstein. “When we care for children, it’s so important to listen to the parents. They know their child best.”
For Ellen and Kurt, their persistence despite all the challenges they faced paid off. “With the health of our children, whether they have autism or not, I say keep pursuing. Be dogged,” said Ellen. “There is a reason for a child’s behavior change and it’s so important that we advocate and push to find answers.”