Two-year-old Asher Pair loves watching toddler educational videos with YouTube personality Ms. Rachel. He smiles and claps along whenever he hears the song, “The Wheels on the Bus.” And as soon as he could turn it on by himself, he began starting each day with music from the Fisher-Price aquarium hanging on the side of his crib.
Setting up a similar aquarium in his hospital room is just one of the many ways our child life team brings “as much normalcy as possible” to Asher’s overnight stays at CHoR, said his mom, Kelly Creekmore.
Born with an atrioventricular septal defect (AVSD), or a hole in his heart, Asher spent most of the first four months of his life here, initially in the neonatal intensive care unit and then in the pediatric intensive care unit. At first, his heart condition left him so weak that he couldn’t lift his head and had trouble breathing and eating on his own.
Although Kelly was planning to take Asher to the pediatrician who followed her older kids, 14-year-old Sierra and 9-year-old C.J., she quickly realized the benefit of having all of Asher’s care team under one roof.
Asher, who also has Down syndrome, is followed by multiple CHoR specialties including cardiology, surgery, sleep medicine, gastroenterology and ophthalmology. His care is coordinated through the Complex Care Clinic and Dr. Tiffany Kimbrough.
“I don’t know what I would do without Dr. Kimbrough,” Kelly said. “She fights for her babies in a way I’ve never seen anybody advocate for their children. He’s not just her patient. She loves him, and it’s very evident.”
The Complex Care Clinic is designed for kids who see five or more specialists and/or are dependent on medical technology. By coordinating appointments, information and resources, the clinic serves as a medical hub for clinical care and overall family well-being. It began in late 2021 and is the only program of its kind in Central Virginia. Unrestricted gifts, including those that provided funding for the clinic’s registered nurse and social worker, make it possible to invest in key programs like the Complex Care Clinic to ensure our teams have what they need to serve kids and families.
Before he was 4 months old, Asher received a gastrostomy tube for feeding, had his adenoids removed to help with sleep apnea and had open heart surgery to repair the AVSD. Since then, he has had his tonsils removed and received ear tubes. Four times a year he gets Botox injections in his stomach to prevent his G-tube from leaking.
Kelly appreciates how easy it is to contact Asher’s team with questions and concerns and is grateful for the support provided by Dr. Kimbrough’s office and the clinic’s care navigator to coordinate appointments and services. In fact, she’s been so pleased with Asher’s team that she recently transferred Sierra and C.J.’s care to CHoR.
In addition to the care provided by Asher’s medical team, Kelly said she can always count on the child life team to engage Asher and provide family-friendly support during clinic visits and overnight stays.
Whether they are blowing bubbles and singing with Asher or providing games and activities for his siblings, Kelly said the child life team “brings light to a situation that’s not so bright.” During Asher’s inpatient stays, including a 6-week stay this past summer, she never worries if she needs to step away from his room because she knows the child life team will be there for him.
Along with child life, strategic partners like Better2gether and Ronald McDonald House Charities provide wraparound support and resources that are critical to the unique needs of kids like Asher and their families. Last year, Better2gether provided toys, snacks and support to over 290 patients seen in the Complex Care Clinic. The RMHC Sibling Center and Family Rooms support families by giving siblings a safe place to go when families are at CHoR. Kelly depends on the sibling center when Asher has appointments, and she doesn’t have anyone to stay with her other kids. This past summer, the family rooms provided a space for Kelly to shower, enjoy a meal or rest – only a few steps away from Asher’s hospital room.
Asher visits CHoR every three months, although Kelly knows she can contact Dr. Kimbrough any time with a question or concern. She is hopeful that Asher will have his G-tube removed soon and that he’ll be able to begin services with physical therapy and the feeding program.
With all the time she spends at CHoR, Kelly appreciates not having to leave town for Asher’s care.
“Living with kids with complex care needs is a lot, but it doesn’t have to be so stressful,” Kelly said. “Having all the specialists together makes it so much easier. I’m so glad I made the decision to keep all of his care at CHoR.”
By Alissa Poole
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