Canadian Down Syndrome Society Prenatal Resources

The following resources are for women who are considering prenatal screening or have recently learned of the possibility of their child having Down syndrome and are seeking more information. These links can be useful for expectant parents and for medical professionals who are consulting with families who are welcoming a baby who has Down syndrome.

CDSS Position Statement: Prenatal Genetic Screening and Testing

The CDSS position statement on Prenatal Genetic Screening and Testing has been developed to share our perspectives that every woman should have access to fair, balanced and up-to-date information about prenatal screening and diagnostic testing for Down syndrome.

CDSS Information about Down Syndrome for Expectant Parents and Medical Professionals

The Canadian Down Syndrome Society created this resource to support informed decision making and to ensure medical professionals and expectant parents have access to accurate and up to date information about Down syndrome.

Click here to read this resource in ENGLISH

Click here to read this resource in FRENCH

For Medical Professionals: A Guide to Sharing the News with Expectant Parents

Sharing the News

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 follow up visits, phone calls or further referrals as many parents may feel overwhelmed upon the initial determination.

Medical Considerations

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.
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

CDSS Down Syndrome Answers

The best people to answer questions about Down syndrome are people with Down syndrome. In 2016, we found the most-asked questions on Google and asked 10 Canadians with Down syndrome to give their answers.
Click here to view short videos that answer some common questions