Reece’s Story: Going the Distance for Expert Care

August 10, 2020

As soon as Stacie and Brian’s daughter Reece was born, doctors told them there was a problem affecting her digestive system. It was Dr. John Fortunato, a pediatric gastroenterologist, who explained it was not just one problem—it was two.

“We’ll never forget Dr. Fortunato’s words: ‘She’s been hit with two lightning bolts,’” Brian said. “There is one area of her body that has two opposite needs.”

Reece had a complex motility disorder of her colon, causing the muscles of the digestive system to function abnormally. Because her symptoms were so severe, she underwent extensive motility testing to measure her digestive tract’s ability to contract. The testing indicated Reece needed an ileostomy, a procedure that connects the small intestine to the abdominal wall to bypass the colon. This helped restore colonic function, but then Reece developed another set of symptoms that later proved to be Crohn’s disease. This made management of her motility problems much more difficult.  

“When we met Dr. Fortunato, we knew he had a plan,” Stacie said. “Up until this point, doctors had told us Reece would grow out of her digestive problems. Dr. Fortunato took us by the hand and walked us through everything. He cared about Reece and understood what she was going through.”

Reece and her family lived in Charleston, S.C., which was about three hours away from Dr. Fortunato’s office. Together, Brian and Stacie decided they would travel as far as they needed so that Dr. Fortunato could continue providing the unique care that their daughter needed to live a long and healthy life.

The Journey Begins

In order to address Reece’s motility problems as well as newly diagnosed Crohn’s, Dr. Fortunato explained she would need a combination of aggressive medical management in combination with further surgery. Ultimately, this would require several surgical procedures for Reece over the course of several years—and frequent travel for her family as they brought her to and from each doctor’s visit.

A few years after Reece underwent her first ileostomy, it was determined that she had Crohn’s disease, a form of IBD that causes chronic inflammation in the gastrointestinal tract. With treatment coordinated by Dr. Fortunato, the Crohn’s has stayed in remission.

Since Reece’s colon function had improved with Crohn’s treatment, her ileostomy was taken down after a long discussion with Dr. Fortunato and her parents, surgically reconnecting her small intestine to her colon. Unfortunately, the function of her colon eventually worsened. She required another ileostomy to be placed followed by a series of operations that ultimately led to the removal of her entire colon.

In 2016, Dr. Fortunato joined Ann & Robert H. Lurie Children’s Hospital of Chicago as the Director of the Neurointestinal and Motility (NIM) program. The NIM program is the only comprehensive pediatric motility program in the state of Illinois and one of only a few in the United States.

At Lurie Children’s, Reece met with Dr. Fortunato and a team of specialists before undergoing a series of operations. Working in partnership with Dr. Julia Grabowski and the Colorectal Health Institute for Pediatrics (CHIPs), a multidisciplinary clinic combining the expertise of gastroenterology and surgery, the team decided to relocate Reece’s ileostomy to the other side of her abdomen. The ileostomy will remain in this position until she is old enough to make her own healthcare decisions. 

In between procedures at Lurie Children’s, Reece has also participated in studies led by NIM that explore the complex relationship between the autonomic nervous system and GI symptoms/motility. This includes her involvement in one of the largest comprehensive clinical databases in the country, studying not just GI symptoms, but co-morbidities that impact quality of life and disability in these complicated circumstances. The data from this clinical registry has already translated into a key study, which aims to take strides in escalating the standard of care for complex patients like Reece. Even at her young age, Reece has already begun giving back to help other kids like her. 

Staying Connected

Reece, her parents, and her two younger sisters were used to traveling out of state for doctor’s appointments. In 2019, they traveled to Chicago seven times—six for procedures, and once for a check-up. But when the coronavirus pandemic hit the United States in March 2020, the family had to adapt to a new set of circumstances that rendered travel and in-person appointments nearly impossible.

Due to circumstances related to the COVID-19 pandemic, Dr. Fortunato and members of the NIM team began meeting with Reece and her parents virtually via telehealth appointments. Together, they discussed Reece’s recovery from a surgical procedure in early March and utilized video chat to gauge her progress.

“It was more effective than email or a phone call,” Brian said. “It was basically the same as an in-person visit.”

Despite the unusual circumstances leading to this, the result has opened up a new way to improve follow-up and communication with Reece and several other motility patients living at distance. NIM is now able to see both new and return patients faster; thereby, increasing access to care both nationally and internationally in some cases. 

Although Reece is mostly receiving care remotely for the time being, she and her family are no less grateful for the doctor and the hospital that have changed her life.

“Because we’ve traveled around and been to so many hospitals, we can say Lurie Children’s and what they offer is above and beyond, from the facilities to the people and the expertise,” Stacie said. “We have no family in Chicago, but people at Lurie Children’s have taken the time to get to know us and care for us. Most other doctors would be in and out. Here, they all make sure we’re comfortable and our concerns are addressed.”

“Having Dr. Fortunato in Reece’s corner for 14 years has given us so much hope,” Stacie said.

This fall, Reece will begin her junior year of high school. Inspired by Dr. Fortunato and her team of providers at Lurie Children’s, she hopes to one day become a pediatric gastroenterologist.

About Lurie Children’s Neurointestinal & Motility (NIM) Program

The NIM program, led by John Fortunato, MD, utilizes a multidisciplinary team approach to create a unique evaluation and treatment plan for our patients. Patients entering the program will be asked by our program coordinator to provide a full review of their conditions in order to provide the optimal care experience. Our state-of-the-art lab provides the most up-to-date motility and neurogastrointestinal testing with novel techniques that allows for a thorough assessment of the patient’s condition. We believe testing and treatment should be individualized for each child’s needs and be respectful of family values. Our family centered model of care includes discussing testing strategies, results and treatment with families and children.