Health & wellness resources

Welcome Families & Caregivers

Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects, so it is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of these heart conditions will eventually require surgery while others only require careful monitoring.

Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their sixties and seventies.

Below are resources on topics related to health.  Feel free to reach out if there is something specific you are looking for or need further assistance.  314.961.2504 or info@dsagsl.org

Helpful Information

Medical Professionals Packet

  • AAP - Health Supervision - Children with Down syndrome
  • Altered Expectations
  • Child Development
  • DS-Connect
  • Family Dynamics
  • Genetics
  • List of Hospitals with Packets
  • Medical Concerns
  • Presenting the Diagnosis
  • Resource List for Medical Professionals

Current Research

DS-Connect is the Down syndrome registry.  Theis webiste allows information to be shared among families, patients, researchers, and parent groups.  Family members or individuals with Down syndrome are able to enter their health history and contact information into a confidential database.

Global Down Syndrome Foundation provides information on research grants for Down syndrome and the importance of research for individuals with Down syndrome.

Research Down Syndrome provides information about cognitive research on Down syndrome.

Stanford University is conducting a new research study on individuals with Down syndrome.  This research study is conducted by Dr. Ahmad Salehi.  The focus of this study is on a therapeutic strategy for intellectual disability in Down syndrome.

LuMind Research Down Syndrome Foundation stimulates biomedical research that will accelerate the development of treatments to significantly improve cognition in individuals with Down syndrome.

Helpful Websites

Caring for Individuals with Down syndrome

Webinars

All webinars provided by the National Down Syndrome Society

Medical Centers

St. Luke’s Ablert Pujols Wellness Center for Adults with Down Syndrome is located at Mr. and Mrs. Theodore P. Desioge, Jr. Outpatient Center in Chesterfield Missouri.  This center is designed specifically for individuals with Down Syndrome who are 17 years of age or older.

The center offers:

  • nutrition coaching
  • exercise therapy
  • social services
  • classes and programs for individuals and, caregivers

For more information please contact 314-576-2300 or ADS.WellnessCenter@stlukes-stl.com.

The Down Syndrome Center is located at St. Louis Children’s Hospital and has seen hundreds of patients with Down syndrome since it opened in 2005.

The Down Syndrome Center at St. Louis Children’s Hospital is a comprehensive and multidisciplinary clinic focusing on the medical and developmental needs of children with Down syndrome. Children are evaluated from birth to 21 years of age, including prenatally diagnosed cases. When your child visits the Down Syndrome Center, he/she will be evaluated by Dr. Dorothy Grange or the CPNP. They will focus on medical and developmental issues, and screening recommendations will be completed.

The Center also collaborates with other specialties as needed: Cardiology, Ophthalmology, ENT, Audiology, Therapy Services, Dietitian and Social Services. The Center also works with additional specialties such as Endocrine, GI, Neurology and Orthopedic Surgery. Our goal is to optimize the quality of life for your child by offering comprehensive individualized care in one setting.

The Center will make it simpler for you by:

  • Arranging appointments at one location with the specialists your child needs to see.
  • Arranging your appointments in the most efficient manner so you and your child gain the maximum benefit.
  • Using a collaborative approach because our team of experienced caregivers is in one location.

The Down Syndrome Center is located at St. Louis Children’s Hospital, 2nd Floor, Suite 2C.

For more information please contact 800.678.5437 or 314.454.6093 or downsyndromecenter@kids.wustl.edu.