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HEart to Heart

new parent heart.jpg

Parents who have experienced heart surgery have some wonderful advice for you to consider. Please review DSG's Heart to Heart Brochure for helpful tips and suggestions before heading to the hospital. You may find it comforting to know that research shows children with Down syndrome have better heart surgery outcomes. 

DSG will gladly match your family with another family who has experienced heart surgery should you have any questions or support needs. We will also visit you in the hospital and provide a meal voucher stipend to help you cover the cost of meals while you are in the hospital. Please contact our office at 913-384-4848 or info@kcdsg.org if you would like to request a parent to parent match or meal voucher.

DSG extends our sincere thanks to Lily's family, photographer Muffet Petrehn and Children's Mercy Hospital for allowing us to share this video.

Eli's Heart seeks to help families with the travel expenses (airline tickets, hotels, gas, Ronald McDonald house charges, etc.) associated with getting their babies’ hearts repaired. Learn more and apply for assistance by visiting Eli's Heart 

Please explore some of the following resources which can help you prepare for heart surgery.

Online Support Group 

Down's Heart Group - UK

Mended Hearts

Kids with Heart


Down syndrome and dementia questionnaire

The Down Syndrome and Dementia Questionnaire is a tool which will assist families and caregivers in acquiring information on daily functioning skills for a person with Down syndrome. The questionnaire is useful for taking data across a number of years and date collected can be shared with medical professionals should a decline in functioning occur.

We recommend families begin taking baseline data at age 30 and keep the documents in an accessible place for various family members to review and refer to over the years. You may wish to consult your primary care physician or neurologist before using the questionnaire as they may have additional advice or measurement tools they recommend.



The Down Syndrome Health Care Guidelines are based on our present level of knowledge and should be modified as new information becomes available. Modern primary health care includes educational and developmental concerns within its domain, and therefore we have included information and recommendations specific to these needs of individuals with Down syndrome.

These recommendations are a thoughtful composite of the input of many experts involved in the care of people with Down syndrome. They reflect current standards and practices of health care in the United States of America. They have been designed for a wide audience: for health care professionals who are providing primary care, such as pediatricians, family physicians, internists and geneticists, as well as specialists, nursing personnel and other allied health professionals, such as physical and occupational therapists, speech-language pathologists and audiologists. In addition to educators and early intervention providers, these guidelines are designed for parents and other caregivers to use with the professionals who participate in the care of the individual with Down syndrome.

Aging and Down Syndrome: A Health & Well-Being Guidebook (NDSS website)

Aging and Down Syndrome: A Health & Well-Being Guidebook (PDF)



Down Syndrome Guild of Greater Kansas City

5960 Dearborn Street, Suite 100
Mission, KS 66202
913-384-4848 Phone
913-384-4949 Fax