Down Syndrome Clinic

SPECIAL CARE FOR SPECIAL PEOPLE: CLINIC HELPS CHILDREN WITH DOWN SYNDROME REACH FULL POTENTIAL
excerpted from Preview: A Newsletter For and About Fairview Health Services, 1 July 1999, Volume 6, Number 13;

In many ways, Adam Menden is a typical 17-year-old with a fondness for sports, McDonald's and Friday nights with friends. Adam was also diagnosed with Down syndrome at birth.

The Down Syndrome Clinic at University of Minnesota Medical Center, Fairview is dedicated to helping patients like Adam. The clinic, which provides care to infants, children and adolescents with Down syndrome, offers comprehensive, multidisciplinary support for the special challenges and needs of Down syndrome patients and their families.

Down syndrome is the most common and perhaps the best known chromosomal condition. Although there are three types of Down syndrome, nearly 95 percent of people with the condition have Trisomy 21, a genetic condition caused by extra genetic material from the 21st chromosome. According to William Rosen, MD, medical director of the Down Syndrome Clinic and Assistant Professor of Pediatrics in the Division of Neonatology at the University of Minnesota Medical School, the condition is diagnosed in approximately one in every 700 to 1,000 births.

The clinic is designed to supplement - not replace - the patient's primary care physician in the home community. "For a patient with Down syndrome, we like to consider a visit to our clinic as an annual tune-up," says Rosen."These patients and their families have special concerns they are dealing with including social, economic, cultural and developmental issues."

"Our goal is to promote optimal growth and development," says Marla Mills, C.P.N.P., Pediatric Nurse Practitioner. "To do this, we offer a broad spectrum of services to our patients and serve as a resource to families, health professionals and Down syndrome support groups."

Down Syndrome Clinic patient Adam Menden and his parents, Mary Jo and Dan, share a lighter moment with William Rosen, M.D., during an appointment.

Initially, patients and families make an in-depth visit to the clinic for screenings for potential medical concerns in children with Down syndrome such as thyroid, heart disease and orthopedic problems.

"For adolescents, there may be behavioral issues," says Rosen. "We help the child meld into society and help parents to gain an acceptance of their child's limitations and potential. Many children are eventually able to live on their own and hold a job." Rosen adds that the family plays a vital role in developing this potential. "Having a supportive family life in the early years and living at home are critical to the development of a Down syndrome child," says Rosen. He notes that Minnesota has been a champion in supporting children with Down Syndrome and their families, as well as promoting their successful integration into society.

For Adam's parents, Mary Jo and Dan Menden, his appointment was an opportunity to screen Adam for medical problems and seek advice on developmental concerns. "We were able to schedule hearing and eye exams today. There are also nutritional issues we would like addressed, and we like the fact that the clinic offers genetic counseling." says Mary Jo. "And this is an opportunity to network with others who have extensive experience with Down syndrome families," adds Dan. "We like the wide array of services available here for Adam."