From Bahrain to Boston for very early onset IBD care

20150723_GassenIBDVEO-16[1]During a recent visit to Boston Children’s Hospital, three-year-old Gassen Boabed quietly entered the waiting room of the hospital’s Inflammatory Bowel Disease Center.

With Mom and big brother in tow, the tiny toddler, boasting a pretty pink headband and nail polish to match, sat at a child-sized table, picked up crayons and started coloring. She was at ease, and her surroundings were familiar.

For the past year and a half, Gassen, a native of Bahrain, a small island country east of Saudi Arabia, has been receiving treatment at Boston Children’s for a rare and debilitating condition called very early onset (VEO) inflammatory bowel disease (IBD). 

The condition, which affects infants and children under 5, causes severe abdominal pain and bloody diarrhea, and it slows growth. The cause(s) of VEO-IBD remain unknown but likely include a combination of genetic and environmental factors.

“Boston Children’s has been taking very good care of Gassen and us as well,” says Gassen’s mother Manal, with the assistance of an interpreter from the hospital’s Interpreter Services Department. “The way they have been dealing with her case has been excellent.”

Gassen shows symptoms of VEO-IBD

Soon after Gassen was born, her parents knew something was wrong. Their tiny baby girl wasn’t thriving. She had little-to-no appetite, was slow to gain weight and had painful bowel movements and diarrhea.

“I expected her to gain weight, but she didn’t,” says Manal.

As the weeks turned into months, Gassen’s symptoms intensified, and her condition worsened. The Boabeds sought the advice of a Bahraini pediatrician, but a diagnosis could not be confirmed.

20150723_GassenIBDVEO-2(2)[1]

Finding help for very early onset IBD

“My husband and I started doing research on the Internet. We realized there are other children with this condition,” Manal says. “And then we started to look at hospitals that deal with this condition.”

Their research led them Boston Children’s, where they found the Snapper Laboratory.

Dr. Scott Snapper, director of the Inflammatory Bowel Disease Center, and colleagues are spearheading a new clinical research program and leading the international Very Early Onset IBD Consortium.

In 2013, Tariq and Manal Boabed packed up their family and traveled 6,400 miles from Bahrain to Boston Children’s, where Gassen has been receiving life-saving care ever since.

“We had no reservations about traveling to the United States except for the language [barrier]. We knew a few words but were worried about deeper conversations,” says Gassen’s father Tariq.

20150723_GassenIBDVEO-1(1)[1]

VEO-IBD treatment miles from home

“When Gassen arrived at Boston Children’s, she had severe Crohn’s disease, was in chronic pain from infections and was malnourished. She also had severe lung infections,” recalls Dr. Athos Bousvaros, associate director of Boston Children’s Inflammatory Bowel Disease Center and Gassen’s attending physician. Her condition was life-threatening, he says.

Gassen’s treatment regimen started with conventional IBD medications. However, her symptoms did not improve. Further testing by Snapper’s group, which was led by Dr. Dror Shouval, who cared for Gassen with Bousvaros, showed the toddler had a genetic immune deficiency which prompted a stem cell transplant, commonly referred to as bone marrow transplantation.

“It wasn’t easy in the beginning,” recalls Tariq. “We were in the hospital more times than we were out of the hospital. But we’ve had good results.”

Gassen’s stem cell transplant was successful, and she is doing great, Bousvaros adds. “She is eating well with no signs of infection.”

Manal and Tariq say, though it has been challenging to be so far from home, their daughter is receiving excellent and compassionate IBD care.

“Gassen loves the nurses and doctors. When we leave the hospital, she wants to go back to the hospital to see her friends,” Manal says. “Hopefully, she’ll be a doctor in the future.”

 

The road home to Bahrain

For the next few months, Gassen’s condition will be monitored at Boston Children’s. However, the goal, Bousvaros says, is for this “sweet, sociable and engaging” toddler, to return to her homeland—free of IBD—and for the Boabed family to resume their lives.

“They are an extraordinarily devoted and loving family,” Bousvaros says. “And their devotion is evident. They traveled halfway across the world to give their child a fighting chance.”

Learn more about Boston Children’s Inflammatory Bowel Disease Center.