18/07/2025
Ashley Metcalf is a Trauma Coordinator for Prisma Health, but when her daughter was born with a genetic condition that had never been documented, she found herself in foreign territory. Charlotte was born April 25, 2022, at 37 weeks, 4 pounds, 12 ounces. She had a cleft lip and cleft palate and an unresearched trisomy – an extra chromosome made up of parts of chromosomes 6 and 22.
“It’s different when it is your daughter. And this condition isn’t even named! There is absolutely no road map for it. Charlotte and God are going to tell us what this journey is like.”
Charlotte, who is now 3 years old, is “amazing,” Ashley said. “She is extremely delayed developmentally. She is only somewhat verbal. She’s starting to use sign language, but she has her own spin on it. We call it CSL, Charlotte’s Sign Language. We just try to figure it out as we go along. She is not able to stand on her own, so she has a wheelchair, which she loves. She has a few issues with her vision. She still has an open palate. The lip was surgically repaired but they haven’t closed the palate yet because it’s a very big surgery and they are concerned that if we close her palate, we may obstruct her airway.”
Ashley said that pediatric surgeon Robert Gates, MD, told her early on, “Charlotte will be a blessing, and the relationship she will have with her siblings will be amazing.” It was hard for her to believe it at the time, she said, but “seeing the relationship they have with her has been one of the best gifts.”
Ashley said she thought she had a “pretty good perspective on priorities – and then there’s Charlotte: ‘Hold my g-tube and watch this!’ It’s been an experience trying to figure out the best way to support her and determine what does Charlotte’s path look like? People think because you’re a nurse you know all about it.”
Fortunately, Ashley had “tremendous support” from team members across Prisma Health, far too many to name them all. Pressed, she singled out Cady Williams, MD, director of the Ferlauto Center for Complex Pediatric Care and a friend. Arun Singh, MD – “Having a pediatric palliative care physician who saw us all as a family and helped us focus on what was right in front of us was such a tremendous blessing!” Ginnette Malay-Romkey, Supervisor of Therapy Services at Kidnetics – “She has been with her since Charlotte was discharged home and been such a wonderful advocate for her and such a resource for us.”
She said that someone who knew of her situation asked if they would go to Atlanta to get care. “We said no, we are in great hands, and we have all these great resources close to home. We truly had a team here that knew what they were doing.”
What Charlotte has been able to accomplish is a result of “the incredibly dedicated, caring and knowledgeable team of occupational and physical therapists, speech pathologists at Kidnetics. They are such a tremendous asset. And there are so many others; we’ve had support at every stage. Patient consultants, palliative care, the Wonder Center day care, Child Life – all these people I worked with professionally or knew on a personal level – knowing that I could trust Charlotte with them meant so much.”
She added, “We still don’t have all the answers, but they are all on this path with us, and they care about Charlotte as a person. They care about our family.”
