Strong Kids

Miracle Kids 2024: Melina Switzer

May. 22, 2024
How a Determined Spirit, Plus Advances in Care, Have Helped a Young Girl Pull Through

Melina Switzer is full of boundless energy.

The 12-year-old spends a good portion of her free time at the Warrior Factory in Rochester, looking to earn her Ninja bands. During these courses, participants build their physical strength, endurance, and agility by engaging in a number of acrobatic exercises. Melina is fully immersed.

Sometimes, however, her days at the gym end short. Her chronic pain—concentrated in her intestinal area—acts up, and she calls her parents after 20 minutes. It’s a constant concern that follows her everywhere, from the Warrior Gym to her other activities, such as participating in the Greece marching band and serving in the Youth Worship Group at her church.

“She doesn’t want her condition to disrupt her life,” said Kelley Switzer, Melina’s mom. “She will participate as long as she can to keep active as a distraction from the discomfort.”

This discomfort—which can keep Melina out of school two to three days a month—reflects a decade-long battle to treat Chronic Intestinal Pseudo-Obstruction. While Melina still struggles today, it’s nothing compared to what she’s been through, and thanks to new treatments and technology here at GCH, there’s reason to be optimistic for the future.

Problems with Eating—from Minor to Emergency

Melina was born prematurely, but her early years were normal. Her physical and mental development stayed on track. The only early warning sign was that she was a little difficult to feed.

“She always seemed to have a slow gut, but the signs were hard to notice at first,” said Kelley.

The serious health issues began at age three, around the time of potty training. First, Kelly noticed Melina’s decreased desire for eating. Then, Melina started experiencing significant abdominal pain.

Kelley took Melina to the Division of Pediatric Gastroenterology, Hepatology and Nutrition (GI) at GCH, where she was seen by Rebecca Abell, DO, a junior attending physician in the division who now serves as chief.

“She first presented to our practice, when she was three, with persistent constipation. The constipation worsened and worsened, despite using every type of medicine we had available,” said Abell. “Eventually, due to her abdominal pain, vomiting, and distention, we got to the point where she couldn’t even tolerate food.”

On the surface, Melina’s case seemed like a bowel obstruction that was preventing food, fluid, and air from moving through the stomach and intestines, but there was no actual physical blockage seen on imaging. So, Melina’s condition remained a mystery. Meanwhile, her health continued to deteriorate. Eventually, Melina was unable to feed by mouth and needed a nasogastric (NG) tube, which is placed through the nose and down the esophagus to provide liquid nutrition. Her condition continued to decline until she could no longer tolerate NG feeds, and her intestines were not able to absorb the nutrients she needed. She required a central line (a venous catheter) for total parenteral nutrition (TPN). At her worst point, she experienced continued visits to the ER for vomiting up to four to five times per day and concern about central line infections.

Yet even through these worst days, Melina displayed a fierce spirit, someone who—in the words of her mother—would go to the doctor and be told that “she looks fine.”

“We struggled with the balance of trying to shelter Melina and mediate the risk of infection and provide as much of a normal childhood as possible, which she always wanted,” said Kelley.

Given that there was no physical obstruction, the working theory was that a part of Melina’s digestive system simply wasn’t functioning, due to either a nerve or muscle issue. Only motility testing—an advanced procedure that examines how both the small and large intestines move—would be the most likely method of diagnosing Melina’s condition. Unfortunately, this testing is only performed at a limited number of centers, and Melina was placed on a nine-month waiting list for the procedure at Boston Children’s Hospital.

“There were only two places in the country who could offer this service to us,” said Kelley. “It was defeating to have to wait that long for our daughter.”

A Steady Recovery

After the long wait, Melina met with Alejandro Flores, MD, director and chair, Ambulatory Community Services, and attending physician in the Division of Gastroenterology, Hepatology and Nutrition at Boston Children’s Hospital, for the test. Since Flores had served as a mentor to Abell during her training, there was effective communication between both institutions.

“They found that while the small intestine was functioning fine, the large intestine wasn’t functioning at all,” said Abell. “The nerves in the large intestine were no longer working, and there was no movement on her motility testing.”

While the diagnosis provided clarity to the Switzer family, Melina’s road to recovery would be anything but smooth. The process would start with an ileostomy, a surgical procedure in which the ileum, the lowest part of the small intestine, is brought through the abdominal wall to create a stoma, which is an opening on the surface of the abdomen that allows waste to bypass the colon and exit the body into a bag.

After the ileostomy, Melina would have to wait two years for her intestines to rest, then undergo an additional motility test to see if the nerves of her large intestines had recovered, in which case an additional surgery would be required to reconnect the intestines to the colon and start the transition back to regular feeding and digestion.

Fortunately, the ileostomy could be performed back home in Rochester and was done successfully by Chris Gitzelmann, MD, at the time a pediatric surgeon at GCH. While Melina still had a long way to go, the initial improvement was significant; she could now move off TPN and receive feeding through a gastrostomy tube (G-tube), which is inserted through the belly and brings nutrition directly to the stomach, and she even started taking a little bit of food by mouth.

“Being on TPN provides calories for kids to grow when the GI system cannot absorb nutrients. However, TPN requires a central line, which can potentially lead to bloodstream infections. CIPO can put people at risk for bacteria overgrowth in the gut that could potentially leak into the bloodstream,” said Abell. “Melina’s surgery helped to get her off of TPN so that we could prevent that risk.”

After two years, the Switzer family arranged for another motility test in Boston with Flores. The test revealed good news: Melina’s large intestine appeared to be working again, allowing food and fluids to move through the intestine as needed. Melina returned to Rochester for surgery at GCH to re-attach her large intestine to her small intestine and begin the process of full recovery.

Throughout all of these years, Melina experienced chronic pain from the level of stress on her GI system, in addition to the challenges of receiving nutrition through central lines and a G-tube. Her mentality never wavered.

“From a young age, she was the type to never let the pain bother her,” said Kelley. “She always seemed to understand that staying in bed didn’t benefit her.”

A Setback, but Hope for the Future

Melina’s second surgery was successful. During the course of several years after the operation in 2018, Melina started to transition from the G-tube to regular feeding by mouth. While she still needed supplemental G-tube feeding at night and for the occasional bowel clean-outs, her GI system looked to be fully working again.

“After almost a decade of medications, medical tests, and interventions, she was finally living the life of a normal kid,” said Abell.

“We weren’t living in the hospital anymore,” echoed Kelley.

But the story didn’t end there. In 2022, Melina’s chronic pain—always present, even in the best of times—started flaring up more, and the constipation started to return. Around the same time, she tested positive for an asymptomatic COVID infection when she was hospitalized for worsening constipation that needed a bowel clean-out. Both Kelley and Abell wonder if this could have caused some worsening dysmotility.

“We know that COVID can cause GI symptoms, and we’re seeing some evidence that COVID may affect the nerves and the motility of the GI tract, much like other infections can,” said Abell.

Fortunately, with time comes new tools to treat Melina’s condition, and GCH is now better equipped to offer help. First, new drugs have been developed in the past decade that can be utilized to potentially cure non-functioning intestines. Melina is taking one of these drugs right now to stimulate bowel movement, and the results haven’t yet been determined.

If these drugs don’t solve Melina’s issues, she’ll need another motility test. This time, however, there’s a strong chance that she’ll no longer need to travel to Boston. Thanks to the purchase of new equipment and the hiring of Ajay Rana, MBBS, MS, in the GI division, GCH will have motility-testing capabilities this year. For the first time in her life, Melina will, potentially, have everything she needs here in Rochester.

“Just to know that something is going to become available is really exciting to our family. It’s rare to have this service, and we’ve met many other families locally who are experiencing similar issues and will benefit greatly,” said Kelley.

While there are many questions yet to be answered, it won’t slow down Melina; she’ll be at gym collecting her Ninja bands.

“After all these years, she knows how to manage it herself now,” said Kelley.