Beyond Crohn’s Disease: Madeline’s Story

More than half a million people are living with Crohn’s disease in the U.S. today. About 40,00 of them are children.

The condition, a type of IBD, has no known cure. Patients must find the right care plan — usually involving medications that affect the intestinal immune system — or face the consequences of chronic inflammation of the bowel, like blockages or even a perforation of the intestine. These complications can be life-threating.

Most people are diagnosed between ages 15 and 35, which is challenging enough. When Madeline was diagnosed, she was just 7. Her age added to her family’s list of worries: If not managed correctly, the disease could affect her growth too.

There are only a few FDA-approved drugs available for kids with Crohn’s, so Madeline’s options were limited from the start. Then the most common medication, REMICADE®, quickly stopped working for her. That unnerved everyone, including her local GI doctor.

“When you’re going through the gold standards of medicines and your kid is quite young, it’s scary,” says Charlotte.

With their local doctor’s help, they found Connecticut Children’s, one of the nation’s top centers for pediatric gastroenterology.
 

Ask anyone in the world of pediatric IBD, and they’ll know the name Jeffrey Hyams, MD. For decades, he’s led groundbreaking research and innovation for this group of diseases, which includes Crohn’s disease and ulcerative colitis.

Dr. Hyams has led pivotal clinical trials for IBD treatments for young people, and tracked almost 2,000 young patients in a long-term natural history registry. He was the recent co-recipient of a $14 million grant from the National Institutes of Health, investigating how children newly diagnosed with Crohn’s disease respond to standardized biological therapies. He also co-directs the Scientific Center for Microbiology, Vaccinology & Pathobiology — a special group within Connecticut Children’s Research Institute.

Long story short, Dr. Hyams is a walking, talking, constantly evolving encyclopedia of pediatric GI care. Yet for all these accolades, he’s also a gentle presence, known to pull out a red foam clown’s nose with younger kids. When Charlotte and Madeline met him for the first time, they both heaved a sigh of relief.

“Dr. Hyams is really nice,” says Madeline. “He’s easy to talk to about things.”

“Dr. Hyams deals with Crohn’s all day, every day,” says Charlotte. “He knows about all the treatment options, the upsides, the downsides. If a medication fails, he knows what the next step should be. He knows all about the new drugs coming on the market, because he does his own research. We have so much confidence in his breadth of knowledge.”

That’s true for the rest of the team too: “The support staff are all specialized in IBD. Our nurse is really great at communication, and at fighting with insurance companies,” Charlotte adds.

Most of the time, Madeline and Charlotte meet with Dr. Hyams and other Connecticut Children’s specialists — like a pediatric GI nutritionist — by Video Visit, from the comfort of home. When Madeline starts new medication, they travel to Connecticut Children’s acclaimed Infusion Center in Farmington to monitor the initial doses in person. When she needs a test, whether that’s advanced imaging or an endoscopy, they always have the option to get it with Connecticut Children’s, which offers GI and IBD specialty care at eight locations throughout the state. Even with the drive from New York, their experience at Connecticut Children’s has proved head and shoulders above other centers.

“The advantage of going to a pediatric-specific health system is huge. Everyone is super experienced with kids and young adults, so they know how to manage all of those protocols,” Charlotte says. “They want Madeline to feel not just OK, but great.”

Living with an invisible illness like Crohn’s disease can be lonely at times, especially for young people. Many classmates and friends don’t quite relate. They don’t know the stress of having to change medications, or the anxiety over how you’ll feel from one day to the next.

That’s why every summer, Madeline attends Camp Oasis, a weeklong camp for kids with Crohn's disease and ulcerative colitis. There, she is surrounded by other young people who get it.

Not surprisingly, many of her fellow campers are also patients of Dr. Hyams — with many, like Madeline, traveling long distances to see this legend in IBD research and innovation.

It’s just one more thing they have in common. That, in itself, is a comfort.

“Being with people who understand what you’re going through definitely helps,” says Madeline. “It can be scary sometimes, but it’s OK. Because there are people in your life that are there for you.”