“It’s night and day, the most amazing turn of events,” Sylvia Pegram says about her daughter’s recent health improvements and the magnetic personality we’re all overjoyed to see more of as she grows stronger.
Since birth, Soleil has faced significant medical challenges stemming from complicated digestive issues, but now, after years of struggles, so many things are finally moving in a good direction for this vivacious 5-year-old. “To see Soleil now, versus where we were. We had to walk a tough path to get to this destination, but it’s a beautiful place to be now.”
Weight loss, weakened system
Soleil showed signs of digestive problems from birth, poor eating being one of the most significant. By the time she turned 2, she was underweight, in the zero-percent range on growth charts and on her way to being labelled severely malnourished for her body’s inability to take in nutrients. “Her system just wasn’t functioning as it should,” Sylvia explains. Soleil experienced painful related effects too – a near-constant upset stomach, serious constipation and stomach contents often coming back up (reflux).
Sylvia and her husband Levion were familiar with our gastroenterology and nutrition services as Soleil’s older brother, Alex, had come to us for treatment and surgery related to a cyst on his esophagus. (He’s doing well now – here’s more on his story.) Sylvia, an emergency room nurse, figured Soleil’s issue was complex and turned to us for specialized help.
Addressing digestive problems can be process. It can take time to uncover and fully understand what’s happening, as related nutritional issues can have widespread effects. Heather Agnew, our team’s nurse practitioner, recalls meeting a subdued Soleil at the start of their journey: “She was lying in her mom's arms so sad looking and malnourished.”
Hoping to find the least-invasive solution to get her on track, her team began with diet changes to improve her digestion and nourishment and medications to address side effects. But there was little improvement with these changes and her immune system, already weakened by nutritional issues, continued to weaken. If Soleil had a cold, it would become so severe she’d end up in the ER. “We were there often,” Sylvia recalls of the complicated cycle. “Ear infections could cause her to become dehydrated. She’d need to draw from every reserve in her body and then she’d have even greater weight loss.”
Testing to figure out if something specific was affecting how her digestive system works was next. Months after turning 3, Soleil had a gastric emptying scan. Through a series of images taken over a three-hour period, this test shows how quickly food moves from the stomach to the intestines. “Sure enough, it was very abnormal,” Sylvia says.
The scan showed that her stomach wasn’t able to empty itself. “Typically, you eat and food goes into the stomach and the stomach will contract to move food through,” Sylvia explains, “but her stomach lacks that.”
This condition, called gastroparesis, is often caused by injury to the nerve that tightens stomach muscles to help move the food through. It can also result from certain infections or conditions that affect how body systems work. Exactly what caused this for Soleil is not known.
Coordinated surgical solutions
Soleil’s team implemented new diet changes right away, eliminating foods known to be hard to digest with gastroparesis and adding foods and supplements that would move through her system more easily and help her gain weight. Again, these adjustments did not result in significant progress for Soleil.
Surgery was an option and her parents were pleased to again work with Dr. David Lanning, who had performed Soleil’s brother’s procedure. Dr. Lanning talked with them about a procedure that improves how the esophagus (tube between the mouth and stomach) works and can help with reflux. Her team also recommended a feeding tube. This would allow nutrition to be provided directly into her stomach through a surgically implanted tube in her abdomen.
While open to both options, Sylvia and Levion were concerned about her body’s ability to handle multiple surgeries. “I knew how much of a setback each would be. Soleil has no real reserve of what the body needs to recover from something as traumatic as surgery. Preserving the little energy and health she had at that time was a huge priority,” Sylvia explains.
With many specialists available through our hospital, it’s not uncommon to coordinate surgery so multiple needs can be addressed at once. Weeks after her diagnosis, Soleil underwent surgery with Dr. Lanning for the esophagus procedure and placement of the tube. He also repaired a hernia discovered during the process. While she was still under anesthesia, one of our ear nose and throat specialists removed her adenoids and placed tubes in her ears, both surgical solutions to help with infections.
This coordinated surgery would eventually “make a tremendous difference in her life,” according to Sylvia, but there was still a big hurdle. Even with the tube, it was difficult finding formula or a food source her body would tolerate. They worked closely with the team’s dietitian for months before finding an all-natural food option in feeding-tube form that worked.
Let the healing begin
Soleil hasn’t had an ear infection in the two years since her surgery and has had significantly fewer respiratory infections.
Medications for side effects are now given through her tube. This ensures they get where they need to be and help her feel and function better.
Her gastroparesis symptoms are improved and strategies from the team have helped integrate tube feedings into daily life. All of this led to some really great recent news: At her last checkup, Soleil had gained a pound.
“It was like winning the lotto,” Sylvia describes that moment. “Hopefully, it will be a continuing pattern.”
They’re working with her team now on minimizing barriers to weight gain and improving her nutritional status and health. Next will be increasing what she’s eating by mouth, eventually weaning her off the tube once she can gain and maintain weight by oral feedings alone.
A joy to be around
Soleil has lots to say and will tell you she likes coming here and the way we make stuff fun, like IPad games during long procedures and stickers at the end of visits. We’re happy to hear this, but we know it wasn’t easy. At times, especially after her surgery, Soleil cried on her way to appointments.
Helping kids find their inner strength for the tough moments that come along with medical issues is part of healing too. Soleil is a great example of someone who’s grown in this way.
“Soleil doesn’t really know her full story yet, but she already knows she’s a conqueror, a survivor,” Sylvia remarks.
She credits our deep understanding of kids’ care and “the wonderful relationships Soleil built with her team” as helping her reach this point. Even with kids as young as Soleil was when they first met, Heather teaches them to how answer questions in their own way about their symptoms, to have their own voice in their story.
Today, Soleil’s not at all shy about telling others about her feeding tube and the backpack she carries around with it. And she runs in with excitement and greets her providers with hugs when she gets here for appointments.
“Soleil used to cling to her mother and not be open to even a physical exam,” Heather reflects, “but now she dances in the office and hops up on the table by herself to be examined. She talks to me about her tummy and her tube and gives a thumbs up with a little smile when I ask her how she's doing.”
With her recent progress, Soleil’s energy level and overall enjoyment in life have improved and thumbs up moments are happening more. “This is the greatest blessing,” Sylvia says.
Despite everything, Soleil does enjoy food – especially if it resembles cake or a cookie. She’s happy to bring peanut butter crackers and raisins for lunch and is a huge fan of her Kindergarten classroom’s reading corner, music and art. (Last year her picture of a snowflake was chosen for display in the county’s Fine Arts Festival.) She takes ballet and tap and will soon start gymnastics. Reciting lines word-for-word from favorite movies like Annie or songs from Bruno Mars is something Soleil is known for. Being a big, bright, conquering personality in the world is too.
“For half her life Soleil struggled with frequent doctor visits, testing, procedures, feeling sick and not eating in a traditional sense,” Heather remarks, “but she still is so vibrant, so jovial and intelligent and a joy to be around.”
“She’s small in stature, closer to the size of a 3-year-old, but when she opens her mouth what comes out is so big,” Sylvia says smiling as she describes her baby - the fourth of her four kids, her “perfect ending” and her “small but fierce” fighter. “There’s so much life in her small little body. I know our journey is not over but we are in SUCH a better place. This experience has opened my eyes to so much good – in people, in medicine, in the resilience of children.”