In almost every case, the path that brings families to the Bowel Management Program at Shriners Hospitals for Children — Northern California has been difficult.
“Most of the time, [the parents] are tearful when we tell them that we can help their child,” says Jennifer Miranda, MSN, FNP – C, one of two advanced practice providers in the program. “A lot of these families think their child will be tied to stool accidents for the rest of their life and they’re relieved that it’s not true. Some families are skeptical, but we typically prove to them rather quickly to trust the process.”
What makes the Bowel Management Program so effective for the toughest cases?
The program is based on a unique model of colorectal care that is spreading across the country and gaining international recognition. That model is a weeklong, intensive program where practitioners try to get the child “clean in their underwear” and equipped with a regimen or treatment that will keep them that way.
When weary families get to Shriners Hospitals for Children — Northern California, they are met by a formidable team of experts. The team includes a dietitian, a gastroenterologist, pediatric colorectal surgeons, a pediatric motility specialist, nurse practitioners and a clinical social worker. Patients are admitted and usually stay for one week. That first day at the hospital, patients receive a contrast enema, for treatment planning; followed by a nasogastric laxative cleanout. Their parents are introduced to the management of incontinence and constipation and briefed on what to expect during the coming days.
Once the child’s colon is empty, he or she is given a stimulant laxative medication, titrated to the optimal dosage over the ensuing days. Children who can be managed that way will leave on a regimen of laxatives and diet. In cases where that is not successful, or possible, the care team designs a daily enema routine for the patient. When those approaches don’t or won’t, work, surgery is scheduled — if and when that is appropriate.
“CHILDREN ARE BORN WITH THESE COLORECTAL DISORDERS AND WE CAN SURGICALLY ADDRESS THEM.”
Dr. Payam Saadai
Every member of the multidisciplinary team has a role, and provides input, on each case. That is exceptionally important as patients with bowel problems frequently need to be managed, rather than cured, and often need social, emotional and developmental support.
A study from two similar programs, both of which are among the oldest in the country, documented the benefits these programs have on patient outcomes.
Nationwide Children’s Hospital, Columbus, and Primary Children’s Hospital, Salt Lake City, pooled data from patients with severe functional constipation seen from 2011 to 2015, a total of 184 children. The data showed that unplanned emergency room visits by these patients declined by 64% and unplanned hospital admissions fell 57%. The savings accrued, for just 184 patients, was an estimated $180,000 (J Pediatr Surg 2018;53:1737-41).
The Bowel Management Program at Shriners Hospitals for Children — Northern California is a part of the Pediatric Colorectal Center. The team is led by medical director and pediatric surgeon Payam Saadai, M.D. He completed his fellowship training in pediatric surgery at Nationwide Children’s and came to the Northern California Shriners Hospital with the specific intent of launching its colorectal program. Today, Shriners Hospitals for Children — Northern California is the first and only hospital designated by California Children’s Services (CCS) as a Colorectal and Urology Special Care Center. This recognition distinguishes the hospital as a destination for outstanding pediatric colorectal care in the state of California.
According to Dr. Saadai, pediatric colorectal surgeons were a driving force behind the creation of these highly focused programs. The first such program was put together by Dr. Alberto Peña, at the former Schneider Children’s Hospital, in New Hyde Park, Long Island, about 20 years ago. Dr. Peña and other pediatric colorectal surgeons realized that, in the past, surgeons operated on infants and babies for anorectal malformations, Hirschsprung’s disease, and other conditions, and then assumed the job was done. But, two and three years later, when the time came for toilet training, problems emerged that weren’t apparent before.
By then, however, these patients, who had persistent, constipation and incontinence problems, were out of touch with their surgeon. And the pediatricians, and even many gastroenterologists they saw, were stumped over how to help because of the patient’s
“Children are born with these colorectal disorders and we can surgically address them,” Dr. Saadai said. “But you don’t know what the outcome of your surgery is immediately, unlike most things we do in surgery.”
There is no typical patient, Dr. Saadai stresses, and the care of such patients can require an exceptional level of expertise.
For example, in 2019, the Northern California Shriners Hospital began seeing a patient who, as an infant, had been admitted to a hospital with abdominal distention. This child received treatment to relieve their constipation. But, there was no formal diagnosis made and, as the child had no other relevant problems, the hospital visit was largely overlooked.
Seven years later, the child’s family took a trip to China. While there, he developed abdominal pain – rather intense pain. The family went to the local hospital. There, doctors determined that the child was severely constipated and suggested that this episode warranted further exploration. They strongly recommended the family see someone when they returned to the United States.
The family returned and came to Shriners Hospitals for Children — Northern California. Here, specialists examined the child and diagnosed Hirschsprung’s disease. Hirschsprung’s is commonly missed in younger children and frequently gets worse as they get older. A pull-through procedure was performed and the child has been well ever since.
“MOST OF THE TIME THE PARENTS ARE TEARFUL WHEN WE TELL THEM WE CAN HELP THEIR CHILD.”
Jennifer Miranda, MSN, FNP – C
In another case, a nine-year-old came to Shriners Hospitals for Children — Northern California for severe constipation. The impacted stool was so large that it had to be removed in the operating room. This child had a twin. But, curiously, the twin never had any problems with constipation, and this may be why the case had confounded previous physicians in identifying the problem. At the Northern California Shriners Hospital, however, physicians were able to work the child up with bloodwork, endoscopy, manometry and surgical biopsy. The child was diagnosed with slow transit constipation.
When it was found that very large enemas were needed to manage the child’s constipation, the child had a cecostomy, where a port is placed in the abdominal wall into the cecum, which allows for a person to have easier enemas that produce more complete clearing of his colon.
The child now has a flat belly, improved appetite, no accidents and is growing well.
Both Dr. Saadai and Miranda said that Shriners Hospitals for Children — Northern California’s collaborative team approach allows specialists to successfully treat complex, challenging cases. “We need a team that can do that, a team that can figure out how to diagnose these kids, and decide what questions we need to ask and how do we improve their quality of life,” Dr. Saadai said.