HEart to Heart
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 email@example.com 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.
Please explore some of the following resources which can help you prepare for heart surgery.
AGING AND DOWN SYNDROME
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.
Other HELPFUL LInks
Health care guidelines
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.
DS Clinics in KC
The Down Syndrome Clinic at Children's Mercy Hospital serves as a consultative service and screening mechanism for children with Down syndrome from birth through adolescence, following the Health Care Guidelines created by the National Network of Medical Clinics for Children with Down syndrome.
An experienced team of professionals with an expertise and interest in Down syndrome participate in a weekly Down Syndrome Clinic in which each provider meets with the scheduled patient and their family to review and evaluate the specific needs of each child. Together, they problem solve and strive to improve the quality of life for the child and the family.
The following specialists may meet with a family (based on individual needs) during a visit to the clinic:
- A pediatric specialist provides age appropriate monitoring of medical issues commonly seen in children with Down syndrome.
- An audiologist evaluates hearing and coordinates services with the Ear, Nose, and Throat physician.
- A behavioral psychologist works with parents on assistance with developmental skills such as toilet training, general recommendations for discipline and behavior management, and addresses learning and behavioral issues associated with school.
- A genetic counselor helps educate parents about the different genetic types of Down syndrome.
- An occupational therapist provides screening for motor development and as the child grows older, makes recommendations regarding appropriate educational programs and services.
- A registered dietitian provides nutritional assessment and dietary counseling to assure appropriate growth and weight gain and identifies nutritional problems and concerns.
- A social worker serves as a supportive listener and advocate, and provides education and assistance related to accessing appropriate resources in the community.
- A speech pathologist provides screening for articulation and language skills and makes treatment recommendations.
- A team coordinator assesses the needs of the family, coordinates clinic services and provides ongoing support for parents and families if needed.
To contact the Down Syndrome Clinic to make an appointment please call (816) 960-2856
The Adult Down Syndrome Clinic at University of Kansas Medical Center supports individuals with Down Syndrome as they reach adulthood. Many families are faced with finding resources for their adult family member with Down Syndrome. Now at the University of Kansas Medical Center, you can access a variety of services and resources through the new Adults with Down Syndrome Specialty Clinic. The Adults with Down Syndrome Specialty Clinic can serve as a medical home where you can establish an ongoing relationship with a personal health care provider to provide comprehensive, accessible and continuous care.
Down Syndrome Guild of Greater Kansas City
5960 Dearborn Street, Suite 100
Mission, KS 66202