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Down Syndrome Program

Doctor holding toddler with Down Syndrome
 

The Down Syndrome Clinic at Children’s Mercy offers specialized services to children with Down syndrome and their families. As the only certified pediatric Down syndrome program in the region, our multidisciplinary team has been serving families since 1989.

The clinic staff, led by medical director Nasreen Talib, MD, MPH, includes experienced professionals from several specialties, including Pediatrics, Adolescent Medicine, Behavioral Psychology, Audiology, Genetic Counseling, Nutrition, Occupational Therapy, Speech Therapy and Social work. Families also benefit from the knowledge and experience of our Advocate adult with Down syndrome, who is a member of the clinic staff.

Our team works together to collaboratively review the unique needs of each child and improve their quality of life through comprehensive, whole-person care.

What is Down syndrome?


Down syndrome is one of the most common genetic conditions. Individuals with Down syndrome have an extra 21st chromosome in all or some of their cells. This additional genetic material affects the course of development, which can lead to developmental delays, intellectual disabilities and increased risk of certain medical issues.

What to expect at your visit to the Down Syndrome Clinic


The Down Syndrome Clinic is designed to help you see many of the specialists your child might need in one visit to Children’s Mercy. At this comprehensive visit, we will screen for common conditions in children with Down syndrome. Early diagnosis and early intervention can help your child function to the best of their ability and lead a healthy and fulfilling life.

The Down Syndrome Clinic visit typically lasts for almost 4 hours. Each child is seen by members of the multidisciplinary team, which may include some or all of the following:

  • Pediatrician or Adolescent Medicine specialist
  • Behavior Psychologist
  • Audiologist
  • Genetic Counselor
  • Nutritionist
  • Occupational Therapist
  • Speech Therapist
  • Social worker

You will also get to meet our advocate for the Down Syndrome Clinic, Karissa, an adult with Down syndrome who works on the clinic staff.

Services

  • Initial assessment and testing for infants with Down syndrome
  • Annual visits and screenings, including blood tests, x-rays, and hearing tests
  • Nutritional assessment with registered dietitians
  • Developmental progress assessments
  • Referrals to specialists such as hearing and speech, occupational therapy, and others
  • Genetic testing and counseling where needed
  • Mental health care and emotional support for children and families
  • Connection to community resources and support groups
  • Telemedicine services for families who live at a distance from Kansas City or for whom travel is difficult

Resources for families and caregivers


There are many resources to help families of children with Down syndrome find support within the community. The following organizations can provide helpful resources for families of children with Down syndrome:

For more local resources, including information about community assistance, financial assistance, mental health, and specific county resources for Missouri and Kansas, please visit our Resources for Children with Complex Medical Needs page.

Resources for health care providers


The faculty and staff of the Beacon Program at Children’s Mercy have compiled a list of resources for health care providers when caring for pediatric patients with complex medical conditions, including Down syndrome. Please visit our Complex Medical Needs in Children: Resources for Health Care Providers page to view these resources.

Down Syndrome Program Menu