Four-year-old Bently Barnes needed to get ready. He opened the closet door, reached for his camouflage backpack, then scanned his bedroom for the essentials.
He grabbed his favorite stuffed animal named, “Marshall,” a truck, tractor and his most prized possession – his blanket. He placed them in his backpack with care, zipped the travel bag and placed it next to his bed.
Bently told his mom he was packed and ready to travel from their home in North Carolina to Boston Children’s Hospital. And he was “ready for a new belly,” he said.
Early signs of chronic pancreatitis
Bently’s mom, Nicole Barnes says her son’s stomach pain began well before his 2015 trip to Boston Children’s. “Bently practically came out of the womb screaming. He cried constantly,” she says.
A local pediatrician diagnosed the newborn with colic and suggested a formula change and medication for acid reflux. But as the days turned to months, Bently’s condition and his pain-filled cries worsened.
“Around his first birthday he began vomiting often,” Nicole remembers. Doctors said it was a stomach bug.
Nicole and her husband Casey took Bently to a local specialist because they knew their son’s condition was more than colic, and more than just a virus. Even though initial blood work came back normal, Bently was still terribly sick. “He would turn pale, become cool and clammy,” his mom recalls.
One day, Bently was so ill, he passed out.
“I rushed him to the doctor closest to us and was instructed to get him to the hospital as soon as possible,” Nicole recalls. Bently was admitted and diagnosed with gallstones and pancreatitis — a rare disease in which the pancreas, the large gland behind the stomach, becomes inflamed.
In order to treat the gallstones, Bently underwent surgery to remove his gallbladder. Once the procedure was complete, Nicole says the symptoms associated with pancreatitis subsided. But the relief was only temporarily — the symptoms eventually resurfaced.
Between the ages of 3 and 5, their young son was hospitalized five times and was under the care of several doctors and specialists. His diagnostic testing regimen included blood work, MRIs, endoscopies and an Endoscopic retrograde cholangiopancreatography (ERCP) — a procedure which allows doctors to identify and treat problems in the liver, gallbladder, bile ducts, pancreas and pancreatic duct.
Typically it is recommended that a pediatric specialist administer the ERCP in order to obtain optimal results. In Bently’s case, a local gastroenterologist, one specializing in adult care, performed the procedure.
Time to visit Boston Children’s Pancreatic Disorders Program
Due to lack of confidence in their local providers coupled with the frustration of watching their son suffer with intense stomach pain, the Barnes family opted for a second opinion and traveled to Boston Children’s Hospital to meet with Dr. Amit Grover and Dr. Victor Fox, co-directors of the Pancreatic Disorders Program.
The program, which is recognized by the National Pancreas Foundation as a leader in the diagnosis and treatment of pancreatic disorders for children, utilizes a multidisciplinary team of experts to effectively manage and treat pancreatic disorders in children.
“When we told Bently we were going to Boston Children’s, he was very excited,” Nicole says. “He packed weeks ahead and when we pulled up to Charlotte Douglas Airport [North Carolina], he was all smiles.”
The Barnes family arrived in Boston in September 2015 and stayed for one week. During that time, a team was assembled to quickly and accurately diagnose Bently’s condition.
“We reviewed Bently’s prior records and our team — radiologists and therapeutic endoscopists, to name a few, was involved in understanding what workup Bently already had,” Grover says. “This allowed us to better understand Bently’s condition and come up with a plan for treatment.”
A pancreatitis plan of action
The next step in Bently’s care plan included a second ERCP, but this time, he was under the care of Fox, who is also director of Boston Children’s Gastrointestinal Endoscopy Unit.
ERCP results indicated Bently had a narrowing in one of his ducts, which was believed to be contributing to his bouts of pain. Fox was able to dilate, or open up the duct and place a small, temporary stent across the narrowed area to keep it open. Almost immediately, Bently was feeling better.
“By coming to Boston Children’s, Bently was able to get a comprehensive evaluation involving multiple specialists with expertise in pancreatic disorders,” says Dr. Grover, who was the primary gastroenterologist treating Bently. “If warranted, further work up would also be available to him with additional supports — and that’s what makes our Pancreatic Disorders Program unique.”
For the Barnes family, bringing Bently to a pediatric hospital made all the difference – from testing to diagnosis to follow up care.
“The fact that they let me be with him going in the operating room, and being the first person Bently saw when he woke up was awesome,” Nicole recalls. “In North Carolina, we weren’t allowed to do either, which was hard.”
Bently returned to Boston Children’s three months later to have the stent removed. Today, the kindergartener is feeling great and finally living life pain-free.
“I am very thankful to have connected with Dr. Fox and Dr. Grover. They both are so patient and always took their time with us,” Nicole says. “Words cannot fully express how wonderful the experience was and how impressed we were with the physicians in Boston.”