Eight-year-old Annabel Beam was on a quest to find the perfect gift. During a 2010 trip from her Texas home to Boston Children’s Hospital, she asked her Mom to stop at the airport gift shop before boarding the plane.
Annabel perused the aisles, examining each item in the hope of finding a token of appreciation for her gastroenterologist, Dr. Samuel Nurko, director of the Motility and Functional Gastrointestinal Disorders Center.
Annabel spotted a cuddly teddy bear wearing blue doctors’ scrubs. She reached for the bear, squeezed its arm, and a musical rendition of “Doctor, Doctor, give me the news…” began to play.
Annabel’s grin spread from ear to ear. “I want to give this to Dr. Nurko, Mommy,” said Annabel.
The teddy bear symbolized the kindness and hope Nurko shared with Annabel while she managed the rare and chronic gastrointestinal condition pseudo-obstruction. And it remains a symbol of the long-lasting bond between Nurko and his young patient.
“It was a very touching moment,” Nurko says of the day he received the teddy bear. “I keep the bear in my office, and he watches over me.”
This was one of many trips to Boston Children’s to treat Annabel’s chronic and often debilitating condition.
The road to Boston Children’s
When Annabel was 4, she had bouts of distended (swollen) stomach and difficulty eating, and she experienced intense stomach cramping and pain. “[Annabel’s] pain was almost always at a level 10, and on a good day, she was at a level eight,” recalls Annabel’s Mom Christy Beam. “She would live in a fetal position on the sofa with a heating pad on her stomach.”
Annabel was seen by several local doctors and underwent an array of tests including blood work, CT scans and X-rays. She was diagnosed with a variety of illnesses ranging from a lactose intolerance to reflux.
“I always felt bad, and my stomach always hurt,” Annabel recalls. “I remember going out to a restaurant; I would take one bite and would be done because the pain would be so overwhelming.”
By the time she was 5, Annabel had a full-intestinal obstruction that required surgery. Nine days after the surgery, she re-obstructed and required a second surgery.
Time for a second opinion
“After the second surgery, Annabel never got better,” Mom recalls. “So we pursued every doctor in Texas who could possibly figure out what was wrong with her.”
Christy says she can pinpoint the moment the decision was made to bring Annabel to Boston Children’s. “I had a doctor tell me that if her daughter was as sick as Annabel — and if she had the same problems — she would have her in the hands of Dr. Sam Nurko,” Christy recalls.
In 2009, Christy, Annabel and her aunt traveled to Boston Children’s for an appointment with Nurko. “Annabel was in a lot of pain when she came to see me,” Nurko recalls. “She had a lot of difficulty tolerating her feedings, was vomiting and had abdominal distention.”
Mom says Annabel and Nurko instantly connected. “Annabel trusted him,” Christy says. “He was sweet and funny, and he made her giggle.”
Following a comprehensive examination and Antroduodenal Manometry — a diagnostic test performed in only a few places around the world — Annabel was diagnosed with pseudo-obstruction. The intestinal disorder is caused by nerve or muscle problems that prevent the intestines from contracting normally to move food, fluid and air through the intestines. “This is a disease where the nerves of the intestines and the muscles don’t work well, and things don’t move,” Nurko explains.
There is no known cure for pseudo-obstruction. However, patients with intestinal pseudo-obstruction often require nutritional support to prevent malnutrition and weight loss. Medication may also be required to treat and prevent further complications caused by lack of movement of the stomach and intestinal contents.
Annabel required nutritional assistance in the form of nasogastric tube (NG) tube. She began treatment with Cisapride, a medication designed to increase motility in the gastrointestinal tract and only prescribed in a few centers throughout the U.S. Annabel’s medication regimen called for her and her family to return to Boston Children’s every six to eight weeks for treatment.
Pseudo-obstruction treatment goal
The goal of treatment, Nurko says, was to prevent complications, stabilize Annabel’s condition, treat her symptoms, improve her quality of life and get her active and functioning again.
“Dr. Nurko didn’t say it was all rainbows and butterflies,” says Christy. “But he showed concern about the seriousness of Annabel’s illness, and he was committed to doing everything he could to give her the best quality of life.”
Annabel and her family traveled to Boston Children’s for nearly three years. She says she found relief from her chronic condition, enjoyed her time with Dr. Nurko and was able visit several Boston attractions during their stay.
“I remember looking forward to going to Boston,” Annabel recalls. “We did the Freedom Trail and the New England Aquarium, and it was always a lot of fun.”
Taking the next steps
In 2012, a Boston Children’s fellow — a motility specialist trained and affiliated with Nurko and the Center for Motility — began treating Annabel in Austin, Texas.
While in Texas, 10-year-old Annabel had a life-changing experience — an experience Christy chronicled in her faith-based memoir, “Miracles from Heaven.”
The story recounts how a near-death accident changed the course of Annabel’s life. The motion picture, “Miracles from Heaven” starring actress Jennifer Garner is scheduled for release March 16.
Today, Annabel says she is feeling like a normal kid. She is extremely grateful for Nurko’s expertise and compassion and happy to see her teddy bear has made a new friend.
“I always looked forward to going to Boston Children’s,” Annabel says. “And I am very glad I was cared for by Dr. Nurko.”
Learn more about about pseudo-obstruction.