This resource was created to support informed decision making and ensure that medical professionals and expectant parents have access to accurate and up to date information about Down syndrome.
Your first words to a family have a lifelong impact. The first words to any parent should always be “Congratulations”! As a medical health professional, you are in a position to create a lasting impression when speaking to expectant or new parents of a child with Down syndrome.
We encourage all medical professionals to become familiar about giving a Down syndrome determination and speaking with the family.
•Share the information in the most supportive environment as possible-preferably in person. If appropriate, suggest their partner or support person to attend.
•Encourage the parents to ask any questions of the medical professionals.
Use accurate and up to date information about Down syndrome. Have balanced information available for the expectant parents.
•Assure the parents that the medical teams/professionals are available to answer questions initially, during follow up and by phone or email if available.
•Reassure parents that Down syndrome is a naturally occurring chromosomal arrangement and is not a disease. It has nothing to do with what they did or did not do to cause the child to have Down syndrome
Dealing with Initial Feelings and Adjusting
•Keep in mind, these are new parents and the birth of any baby is happy news.
•Parents will react differently to learning their child has or may have Down syndrome, but show concern and support during a more challenging time.
•Remind them that they are not alone on this journey and they may want to connect with other parents and families who have a child with Down syndrome. Ask if they would like to be connected with a local Down syndrome group or arrange for a parent visit.
•Plan for a follow up visits, phone calls or further referrals as many parents may feel overwhelmed upon the initial determination.
With appropriate medical interventions and treatment, most people with Down syndrome can live healthy lives. In 1983, people with Down syndrome only lived to about 25, now the average is 60 years old. However, as with anyone else, there is no definitive life span and some people with Down syndrome have lived well into their 70s. (Global Down Syndrome Foundation)
Some health concerns for people with Down syndrome may include:
• Congenital heart conditions
• Gastrointestinal issues
• Sleep issues
• Respiratory infections
• Thyroid problems
• Vision and hearing problems
• Increased risk of developing childhood leukemia
It is important to remember that not all people with Down syndrome will experience these health concerns. Most health issues associated with people with Down syndrome also occur in the general population and in many cases, the health conditions can be successfully treated and managed by careful monitoring.
These resource links are provided by organizations in the Down syndrome community as well as international health organizations. The Canadian Down Syndrome Society strives to provide the most up to date and accurate information about COVID-19 to help individuals and families respond to the demands of the situation. Please see visit your provincial health authority websites for the latest updates in your community.
Coronavirus disease (COVID-19) Outbreak update: https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-1
Q&A on COVID-19 and Down Syndrome https://www.globaldownsyndrome.org/wp-content/uploads/2020/03/QA-on-COVID-19-and-Down-Syndrome-Expanded-Version-03-26-2020.pdf
National Down Syndrome Society https://www.ndss.org/coronavirus-covid-19/
Down Syndrome International https://www.ds-int.org/news/supporting-the-global-down-syndrome-community-during-the-coronavirus-crisis
World Health Organization https://www.who.int/
LUMIND IDSC https://www.lumindidsc.org/t21covid/
Mass General Hospital for Children Down Syndrome Program https://mailchi.mp/779134e78b2d/covid-19-and-down-syndrome-updates
Down Syndrome Ireland https://downsyndrome.ie/coronavirus-resource/
RT21 Regroupement pour la Trisomie 21 https://trisomie.qc.ca/ressources-sur-la-covid-19/
Green Mountain Advocates Easy Read Resource FRENCH https://cdss.ca/wp-content/uploads/2020/03/COVID-19_Self_Advocate_Easy_Read_FRENCH_resource.pdf
Green Mountain Advocates Easy Read Resource ENGLISH https://selfadvocacyinfo.org/wp-content/uploads/2020/03/Plain-Language-Information-on-Coronavirus.pdf
Brain POP Coronavirus Video https://www.brainpop.com/health/diseasesinjuriesandconditions/coronavirus/
Canadian Mental Health Association https://cmha.ca/
Council for Intellectual Disability https://cid.org.au/wp-content/uploads/2020/03/Coronavirus-and-mental-health.pdf
Special Olympics Canada https://www1.specialolympicsontario.com/stay-active/