Partner Spotlight: Sie Center for Down Syndrome at Children’s Hospital Colorado

My name is Dee Daniels. I am the Program Director and certified pediatric nurse practitioner for the Sie Center for Down Syndrome at Children’s Hospital Colorado. I also serve as an adjunct Senior Instructor for the University of Colorado College of Nursing.

The Sie Center for Down Syndrome opened its doors in November 2010 thanks to a generous donation from the Anna and John J Sie and the Global Down Syndrome Foundations. The Sie Center for Down Syndrome is a specialty clinic serving children and their families starting in the prenatal period for those who have a prenatal diagnosis through 21 years of age. We are a large multidisciplinary clinic that includes a developmental pediatrician, myself as the nurse practitioner, a physical therapist, a speech therapist, feeding therapists, occupational therapists, a special education teacher, a social worker, a registered nurse, a psychologist, a psychiatrist as well a program and research coordinator. To date, we have served over 1400 unique patients from 27 states and seven countries. Twenty-eight percent of our population is Hispanic. Our team of experts strives to offer comprehensive specialty care to optimize each child’s health and wellness. Our ultimate goal is to improve the quality of life for children and young adults with Down syndrome as well as provide a base of support and education for their families. We also are involved in clinical studies, collaborating with many other sub-specialty clinics in the hospital, to improve the future care of those with Down syndrome including ongoing research on the impact of the Reach Out and Read Program in a Down syndrome clinic.

Even though the Reach Out and Read Program is designed for the primary care provider setting, we felt that our children could genuinely benefit from the efforts of the Reach Out and Read Program by encouraging families to read aloud to their children and provide books to the families during their clinic visit. We applied to partner with Reach Out and Read Colorado in 2014. As far as we are aware, we are the first Down syndrome specialty clinic to offer the Reach Out and Read Program to our families. Down syndrome is a multi-system disorder that encompasses medical issues including respiratory disease, cardiac defects/disease, immune and endocrinology disorders, gastrointestinal malformations and disease and sleep disorders, to mention just a few. Other areas include vision issues, hearing loss, low muscle tone including oral-motor delays, feeding issues and speech-language delay, particularly expressive speech, as well as a wide range of developmental delay and cognitive issues.

It is these last areas that led me to investigate if we would be able to offer the Reach Out and Read Program in our clinic. Various research studies have shown that early intervention and early exposure to books can have a positive impact. Compared to typically developing children, many children with Down syndrome can learn to read at an early age given the tools and opportunity. Visual memory is often much stronger than auditory memory in those with Down syndrome (Teaching Children with Down Syndrome to Read – Sue Buckley, Department of Psychology, Portsmouth, UK). This is the reverse of the development seen in most typical children where auditory memory is better than visual memory. Looking at books coupled with reading aloud to our children can serve to improve their learning, vocabulary, listening skills and socialization. We are honored to be part of the Reach Out and Read Colorado community.

Thank you Reach Out and Read Colorado from the Sie Center for Down Syndrome and our families!

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