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.
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 the Children’s Hospital of Richmond (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 the 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. A feeding tube was recommended, which resulted in a surgery that included the 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.
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.
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.
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.”
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