"It's clear there's a tremendous need in this area," said Philip Frykman, MD, PhD, associate director of Pediatric Surgery at Cedars-Sinai (left).
Families of children who suffer from fecal incontinence, a condition that causes embarrassment and often hinders social and emotional development, can seek help from Cedars-Sinai's Pediatric Bowel Management Program in the Division of Pediatric Surgery part of the Maxine Dunitz Children's Health Center.
Using an interdisciplinary approach of treatment, medication and behavior modification techniques, the program has seen a success rate of 90 percent in helping patients manage fecal incontinence.
"We want to improve the quality of life for these children, and for the families of these children," said Philip Frykman, MD, PhD, associate director of Pediatric Surgery at Cedars-Sinai.
Most children with fecal incontinence suffer from colorectal problems, anorectal malformations or Hirschsprung's disease, a condition in which nerve cells in the intestines are missing. Some children with anorectal malformations that have been surgically repaired lack the muscle tone for successful sphincter control. Others can't feel the physical cues that a bowel movement is imminent.
For infants and toddlers in diapers, the inability to control the passage of stool or flatus is not a problem. But for older children, fecal incontinence causes them to continue to soil their clothing, even as their peers have become toilet trained, Frykman said.
"Often when parents start noticing the problem is when the children are entering into preschool," Frykman said. "The parents are unable to get their children toilet trained, and may not know that there is a place they can get help."
Children at the Pediatric Bowel Management Program go through an initial evaluation process. The physicians and nurses examine the patients' medical records, do X-ray studies and examine the patient under anesthesia. Based on the results of the evaluations, the team creates a treatment program.
"Kids with repaired anorectal malformation often don't have much sphincter function, so they are managed with enemas," Frykman said. "It may take a little while to adjust to it, but it's very successful among the patients who are compliant. The kids will have one bowel movement per day, and they are in underwear instead of diapers."
Among the patients with a successful outcome in the Pediatric Bowel Management Program was 7-year-old Ella Slezak, who was born with spina bifida. Due to congenital nerve damage in the lower end of the spinal cord, children with spina bifida lack the muscle tone needed to manage bowel movements and are unable to control their internal and external anal sphincters.
Because she was unable to control her bowels, Ella was chronically constipated, her abdomen was distended, and she was often in a great deal of discomfort.
Ella's mother, Lynn Kataoka, wanted a better quality of life for her daughter, so she made an appointment with Frykman. After Frykman and his team conducted physical exams and a series of tests on Ella, Lynn Kataoka elected to have Ella undergo a Malone antegrade continence enema, or MACE.
In the procedure, the surgeon uses the patient's appendix to create a passageway between the colon and the skin of the abdomen. A catheter is then threaded through the stoma, and saline and other fluids are used to flush the bowel via the abdomen rather than the rectum.
The daily procedure, which requires Ella to sit on the toilet for about an hour as it is performed, results in regular bowel movements, Lynn Kataoka said. Ella also has a catheter in her urethra several times each day to void her urine. For the first time in her life, Ella is wearing underwear like her peers, instead of diapers.
"The surgery has been life-changing for all of us," Kataoka said.
For Frykman, the most surprising part of creating the Pediatric Bowel Management Program has been learning that it is the only one of its kind in California.
"The astonishing thing to me is that there are techniques and approaches to manage these kids, but using medications and enemas isn't well-applied across the board," Frykman said. "So when I'm seeing not just my own patients, but those from other hospitals, it's clear there's a tremendous need in this area."
Patients are coming to the new program through physician referrals and word-of-mouth from parents.
"Mothers are talking about the program, and they're blogging about it," Frykman said. "The resource they need is finally available."