First characterized by John Landon Down in 1862, Down syndrome is a chromosomal arrangement that occurs naturally across all racial and gender lines and is present in approximately 781 births a year in Canada.
There are an estimated 45,000 Canadians living with Down syndrome. And today, thanks to appropriate medical interventions and monitoring, most people living with
DS can have healthy lives with a predicted life expectancy of 60 years—a sizeable increase from a 1983 rate of 25 years. In fact, some people have lived well into their seventies.
Down syndrome is identified from chromosome studies done at birth. The diagnosis will be one of three types.
- Trisomy 21 is the most common type of DS—it includes 95 per cent of people.
- Translocation occurs in only 2-3 per cent of those born with DS.
- Mosaicism is the least common type of DS at only 1 per cent. These children are born with an extra chromosome 21 in only a percentage of their body cells.
No matter which type a child has, the effect of the extra genetic materials will be unique to them. They will have their own strengths, likes, dislikes, talents, personality and temperament. Think of the person first. DS is just part of who they are.
Possible health concerns
Some medical conditions that may occur for some people include:
- Increased risk of developing childhood Leukemia
- Congenital heart conditions
- Gastrointestinal issues
- Respiratory infections
- Sleep issues
- Thyroid problems
- Vision and hearing problems
People with Down syndrome are limited on what they can achieve in life.
People with Down syndrome participate in school, sports teams, performing and visual arts programs, volunteer and are employed in the community. They are able to achieve life goals and participate in their communities just like everyone else. People with Down syndrome may face some challenges in their life but with the proper supports and resources, they will be able to continue to learn, contribute and live a meaningful life.
People with DS cannot attend regular public schools.
All students including those with Down syndrome, have a right to be included and progress within an inclusive educational environment. Students of all abilities can learn together and are valued as participating students. Most children with Down syndrome have a mild to moderate level of intellectual disability, and may have to work harder to reach the developmental milestones and may need some level of support. Some will have more significant educational and support needs and may require a specialized program. Early involvement from intervention specialists like speech language, physical and other developmental therapies as early as infants, toddlers and throughout childhood can help with developmental delays.
People with DS cannot live independently and will depend on their parents for the rest of their lives.
Many expectant parents worry about how a child with Down syndrome may change their lives and affect the rest of the family. They may have a hard time envisioning their family and the potential successes and challenges of raising a child with Down syndrome. A great deal of work has been done in improving advocacy and acceptance for people with Down syndrome. This has made it possible for people with Down syndrome to get a post-secondary education, find employment and a growing number are living independently or semi-independently. More opportunities are available today for education, employment and living options than ever before. With the proper support and preparations, people with Down syndrome can live an ordinary life with abundant opportunities and be a vital part of the community.
Babies born with DS are not healthy.
The effects from the extra genetic material vary from person to person, and there is an increased chance that babies born with Down syndrome will have health issues. During the pregnancy and after the baby is born, there will likely be careful monitoring to help manage and treat any health issues that arise. Although people who have Down syndrome can experience some health concerns, there are no guarantees that the baby will experience any or all of the common health conditions.
Day to day life
Things have changed and opportunities that are available for people living with Down syndrome have improved greatly. Like other youngsters, children with DS may face challenges throughout their lives and experience negative attitudes and low expectations. However, parents and health professionals challenging outdated thinking, new levels of awareness and acceptance for kids, teens, and adults living with DS have become a reality. Today, community learning environments with their peers, post-secondary education, better employment opportunities and facilitated independent living are a reality. #seetheability!
Excerpted from the Canadian Down Syndrome Society. For more information visit cdss.ca