Sharing her Champion spirit

Three years ago, Soleil Pegram’s now 11-year-old brother, Alex Snead, represented Children’s Miracle Network Hospitals as the Champion ambassador to support Children’s Hospital of Richmond at VCU. This year, it’s 6-year-old Soleil’s turn—and she can’t wait. In December she participated in live and pre-recorded interviews for the 36 Hours for Kids Radiothon, and this year she’ll continue sharing her story of how perseverance and teamwork are helping her grow.

The youngest of five children, Soleil has a “creative, amazing imagination” and loves “dancing, tumbling, flipping and grooving all day,” according to her mom, Sylvia. The first grader loves reading, writing and all things related to school, even the homebound instruction she’s been receiving for the last 15 months, long before COVID-19 brought the rest of her siblings home.

From the beginning

Sylvia said her daughter’s health challenges began at birth. At first, doctors suspected reflux or food intolerances, but following a year without Soleil gaining any weight, the family was referred to CHoR. After nearly another year of multiple changes in feeding habits and a variety of diagnostic procedures, Soleil was diagnosed with gastroparesis, a condition that causes problems with stomach emptying and can lead to pain, vomiting, constipation, and poor weight gain and growth. Her team developed a treatment plan focused on both nutrition and growth and improving her stomach’s functionality.

“It was an incredibly stressful time,” Sylvia recalled of the years before Soleil’s diagnosis. “Meal time should be a time of relaxation, but we never knew when she would vomit or we’d have to spend an hour to get her to eat.”

By the time she was three years old, despite the efforts of her CHoR team and her family, Soleil was losing weight and not getting the nutrients she needed to stay healthy. Her feeding clinic nurse practitioner Kimberly Ritenour recommended a feeding tube and referred Soleil to Dr. David Lanning, co-surgeon-in-chief, who had also operated on Soleil’s brother in 2016 to remove an esophageal duplication cyst.

Sylvia recalled how Dr. Lanning coordinated Soleil’s surgery with other CHoR specialists to address multiple needs, including placement of the feeding tube, a hernia repair and an esophageal procedure to help the stomach’s function as well as adenoid removal and ear tube placement by an ear, nose and throat specialist.

“Dr. Lanning’s knowledge is not just based on what he knows as a physician and surgeon,” Sylvia said of his recommendation for the esophageal procedure. “It’s also based on experience. Dr. Lanning is the person who created the way for our daughter to be nourished.”

Finding new partners

Because gastroparesis affects the stomach’s ability to move food, Soleil wasn’t able to tolerate the tube feedings and continued to have problems gaining weight. Working in collaboration with her CHoR team, Soleil’s family sought recommendations from other pediatric specialists. The combined group worked together to help Soleil manage her symptoms, make mealtimes less stressful and monitor her weight gain and growth.

“Our team was incredibly open and receptive to incorporating outside recommendations,” Sylvia said. “What I appreciate most is seeing how our team works with others outside the system. I see their priority is Soleil. They care about her well-being.”

With Soleil’s primary care physician also at CHoR, Sylvia is able to schedule primary care and specialty appointments during virtual or in-person visits on the same day. And while some of Soleil’s appointments occur every 6-8 weeks, Sylvia knows she can contact the team, including nurse practitioner Heather Agnew, anytime.

“From day one Heather has really connected with us as a family, and as Soleil has gotten older, she has really connected with Soleil,” Sylvia said. “The team has been instrumental in bringing some normalcy to something that is so abnormal at times.”

Caring for all kids

On days when she needs to bring her other children to Soleil’s appointments, Sylvia said she’s appreciative of the RMHC Sibling Center. Located in the Children’s Pavilion, the Sibling Center provides a safe and fun environment for siblings so parents can focus on their child receiving medical care.

“René [Moss, site director] embraces the kids and creates some normalcy,” said Sylvia. “She is a huge positive impact on families.”

As director of nursing for a home care agency, Sylvia said she’s met many people who don’t have access to pediatric specialists or a dedicated children’s hospital. She doesn’t hesitate to share the importance of CHoR and the specialists the hospital attracts to the area.

“You can’t approach medicine the same way for adults and kids,” she remarked. “Having providers focused on children, you know the outcomes will be different. As a family we’re so grateful for Children’s Hospital. We know our journey will be long, but we’re ok because of who we have on the road with us.”