Dr. Kate Westmoreland was leading a pediatric cancer research program in Malawi, Africa when she found out the daughter she was pregnant with would be born with Down syndrome. After moving back to the U.S., having her daughter Izabel and going through a variety of treatments, she realized the difficulty of all the steps in the medical system for families seeking care.
“I was just trying to figure out everything that I could — like, ‘What is the innovations waiver, what is CAPC/C… what are all these new terms and how can I figure out all the things I need to do to take care of her,” she recalled to 97.9 The Hill. “As a pediatrician in the system, I was like, ‘Wow, I’ve got to do something after I’ve learned how to navigate the system and learned so much more about down syndrome through all the contacts…’ I just wanted to find a way that I could give this back to new parents and help walk them though those first years in the journey.”
On Friday, Westmoreland’s vision formally comes to fruition — as UNC Health opens its UNC Down Syndrome Clinic at its Chapel Hill hospital campus on World Down Syndrome Day. The dedicated program, which offers tailored treatments and specialties for individuals with Down syndrome, held a ribbon-cutting ceremony on Monday at the UNC Children’s Hospital in advance of welcoming its first patrons.
Dr. Kate Westmoreland prepares to cut the ribbon at the Down Syndrome Clinic at UNC Health’s Chapel Hill hospital campus. (Photo via UNC Health.)
Dr. Kate Westmoreland and her daughter, Isabel, at Monday’s ribbon-cutting ceremony. (Photo via UNC Health.)
Being an interdisciplinary clinic, patients will have access to a team of experts across multiple specialties with experience treating people with Down syndrome. Individuals and their families can come for regular visits and have the opportunity for additional services that could be separate appointments elsewhere — like vision screening, hearing screening, physical therapy, occupational therapy, speech therapy and dietary resources. As part of the holistic care, the Down Syndrome Clinic will also have sub-specialists within the UNC Health system to help patients receive appoints for psychology, cardiology and endocrinology needs that could take years to get an appointment. A nurse coordinator will work as a liaison between patients and the providers to help streamline the process and limit the burden of scheduling for families.
Westmoreland, who is the program’s medical director, said she spoke with dozens of Down syndrome clinics across the country to build out how UNC’s would be structured. Recruiting for the clinic, she added, ended up being smoother than expected because of people’s interest in tailoring the patient and provider experience.
“When [the clinic idea] first started, I was like, ‘Well, even if it’s just me and just the nurse coordinator [it will work],'” said the pediatrician. “But it was amazing to around to all the UNC specialties [and see] the UNC family just truly rally behind me and everybody was like, ‘How can we help? What can we do to help?’ Everyone wants to do whatever they can to help support this effort and help individuals with down syndrome optimize their care.”
Beyond offering the more efficient care, UNC Down Syndrome Clinic is also unique in offering its services through patients’ adulthood. Westmoreland said in her research and conversation with other families who have members with Down syndrome, that option is rarely available. UNC’s clinic will be just the second lifespan clinic for individuals with Down syndrome in the southeast beside one in Florida. It will also be just the second Down syndrome clinic in North Carolina after one at Duke Hospitals, which Westmoreland said had high demand when she was navigating initial care for Izabel.
And, Westmoreland added, she believes her personal experience as a mother of a child with Down syndrome will help shape the clinic’s approaches — not just by filling the gaps in the care process, but addressing smaller elements to help make visits smoother for the patients, families and medical staff. She described how procedures like blood draws can be traumatic for everyone involved when staff are not well-prepared for a Down syndrome individuals’ tendencies and preferences.
“Even the tiny, little details [like] making a social story so patients know what’s going to be happening, having a child life [specialist] there, putting numbing cream on the arm before blood draws, [having] distraction items that we’ve purchased,” Westmoreland listed. “If you’re not a mom, you don’t realize a little detail like that can make such a dramatic difference on what the experience is like and [it’s good] the medical director is thinking about.”
The project was made possible, in part, thanks to a $100,000 gift by the North Carolina Down Syndrome Alliance to establish a fund for the clinic. The advocacy nonprofit — where Westmoreland serves on the board of directors — aims to improve healthcare access and outcomes for individuals with Down Syndrome by operating a resource hub for families across the state.
“NCDSA is honored to support this initiative and invest in a clinic that will make a meaningful difference for families in our community,” Amy Navejas, the executive director of NCDSA, said in UNC Health’s release about the clinic. “This partnership with UNC Children’s reflects our shared dedication to ensuring every person with Down syndrome receives the specialized care they deserve.”
While Westmoreland asked families for patience both as the clinic gets function and navigates its own place within the medical system, she said Friday’s opening will be an exciting moment that represents a major accomplishment for North Carolina’s Down syndrome community and their loved ones.
“A year ago, this was all still a dream and now it’s a reality,” said Westmoreland. “I just can’t wait to get open, meet families, and walk alongside them on this amazing journey. It has its challenges, but as a clinic, we’re going to be right there [with them], and it also has endless joys and to be able to celebrate every milestone that the kids are reaching.”
Appointments for the UNC Down Syndrome Clinic will take place at the UNC Hospitals Children’s Specialty Clinic, which is located on the ground floor of the campus’ children’s hospital. Providers can refer patients, or families can self-refer by calling 984-215-5557 or emailing [email protected]
Featured photo via UNC Health.
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