Fighting for the next family: Mom’s experience inspires nutrition support guidelines

Michelle fought to ensure that her twins receive the nutrition support they need at school for short bowel syndrome.

As Michelle Marti watched her twin sons, Nicholas and Max, run around the playground, she worried. To a stranger — like the representative of their local school’s Planning and Placement Team (PPT), there to evaluate the boys’ eligibility for special needs services in kindergarten — they looked like any other kids having fun. But their playfulness masked a serious illness: short bowel syndrome, the result of a condition called Hirschsprung’s disease. “They look healthy on the outside because all of their medical differences are under their clothes,” admits Michelle.

Those differences include an ostomy for Nicholas and an ostomy, gastrostomy tube (g-tube) and a central venous catheter for Max, which provides 100 percent of his nutrition and hydration through his bloodstream and puts him at high risk for life-threatening complications. The twins, who have long been patients of the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital, require very close monitoring to stay healthy.

Yet when it came time for the PPT to make a decision about special assistance, “their answer was a big fat no,” says Michelle. “They told us they’d ‘keep an eye’ on the boys, like they do for kids with food allergies.”

Taking it to the next level

Michelle and her husband, Oliver, learned that even though their sons have life-threatening nutritional needs, their school didn’t offer the necessary accommodations for them, the way it did for children in special education classes. They couldn’t grasp the seriousness of short bowel syndrome or the importance of nutrition support and hydration. “It was clear that the school didn’t know what to do with our boys and we didn’t feel comfortable with that.”

Yet when Michelle spoke with other parents of “short-gut” kids, she discovered that school-based services vary wildly throughout her home state of Connecticut — and even throughout the country. “There was no consistent approach across the board,” she says. “There were no school guidelines for kids on nutrition support.”

Her friend and mentor Ann Weaver, a fellow member of The Oley Foundation, a nonprofit organization dedicated to education and advocacy involving home IV nutrition and tube feeding, suggested Michelle take her concerns to the next level. Even as she fought her local school board to get Max and Nicholas the services they needed, Michelle began chronicling her challenges on paper.

An inspired collaboration

The frustration that poured onto the page became a persuasive piece that helped spur the American Society for Parenteral and Enteral Nutrition (ASPEN) to get physicians, nurse practitioners and other parents involved. The result is “Resources for the Provision of Nutrition Support for Children in Educational Environments,” a special report in the September 2017 issue of Nutrition in Clinical Practice.

This collaboration between clinicians and parents provides first-of-their-kind guidelines aimed at giving educators and school-based health professionals a road map to creating a safe, healthy and supportive learning environment for kids who require nutrition support therapy. “We hope that this report gives parents another resource and helps communicate what they sometimes can’t if they feel intimidated by their school district,” explains Michelle.

The report details the best practices for maintaining and monitoring g-tubes and central lines and explains how to recognize and address potential complications, so teachers and school nurses know how to deal with common problems. It also outlines ways to ensure that your child’s school is prepared to administer proper care, such as having a set of physician orders on file, educating classmates and taking precautions during gym class and other activities to make sure devices stay intact.

Paying it forward

“As Michelle points out, the variance of information, support and overall service rendered between school systems is inconsistent at best. This often leads families and providers to feel confused about what their rights really are in this process,” says Jessica McCaig, CAIR’s dedicated social worker. “We hope guidelines such as these will help parents, clinicians and school systems be more prepared to meet the unique needs of children with short bowel syndrome. We’re excited to be able to share them with other families as they navigate this process.”

Michelle says she’s just glad that others can benefit from her experience. “I was just trying to fight for my kids, but it’s become this big thing and I’m so proud of that,” she says. “Parents of medically complex kids have enough on our plates. If I can leave it so the next family doesn’t have to fight as hard, I’ll be happy.”

Learn about the Center for Advanced Intestinal Rehabilitation.