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

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 chil...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Parenting Center for Advanced Intestinal Rehabilitation Hirschsprung's disease Jessica McCaig short bowel syndrome (SBS). total parenteral nutrition Source Type: news