After Miracles, One Mom Advises Parents to Heed “Tummy Problems”
Advocacy After a fall from a tree, 13-year-old Annabel Beam was deemed “totally asymptomatic” from the digestive disease she’d suffered from for years.
Seeing Annabel Beam today, it is hard to believe she was diagnosed seven years ago with a rare and life-threatening digestive illness. Her recovery, chronicled in her mother Christy Beam’s New York Times bestseller, “Miracles From Heaven,” and also in a major film of the same title, has quelled the suffering.
From symptoms to treatment
But the road to her diagnoses was an arduous journey, filled with constant pain and countless hospital visits. Annabel’s discomfort started at age 4 when she complained of “tummy troubles” and searing pain. Her belly was large and distended and she had trouble going to the bathroom.
“At one point, Anna was on 10 medications, including one Nurko had to secure through special FDA permission.”
Following numerous tests, a near fatal bowel obstruction and two back-to-back bowel obstruction surgeries, Christy felt they were merely “chasing the diagnoses.”
The search for answers led them to Dr. Samuel Nurko, a pediatric gastroenterologist who through motility testing uncovered she had pseudo-obstruction motility disorder. At one point, Anna was on 10 medications, including one Nurko had to secure through special FDA permission.
“It is a very difficult disorder to treat and even more difficult to live with,” says Christy, who vowed to not let the disease “define” her daughter. “We carried on with life as ‘normal’ as we could, doing several things to distract her from the pain,” she explains, citing a trip to Walt Disney World. “One time Anna was so sick and in so much pain she did not want to get out of bed, which is the worst thing because physical activity helps the bowel move.”
Championing your child
Her dad said he’d let her shave his head if she would get out of bed. “She did and that is such a fun and sweet memory,” Christy recalls.
Her advice to parents of children with digestive disease is to be vigilant in their child’s care. “Be your child's advocate and trust your gut instinct. Try to carry on with your life and your new normal with hope and courage.”