Clearly there’s a need for greater sensitivity in the ways such information is delivered to families coming to terms with prenatal or birth diagnoses. Dr. Baumer and Dr. Davidson, from Boston Children’s Hospital, mention that many medical schools have specialized programs to educate medical students about genetic and developmental conditions like Down syndrome. These programs aim to “help doctors to develop the knowledge and communication skills to provide accurate information in a kind, balanced, and non-judgmental way.” They also note Boston-based programs for medical students — “More To Life Than Genes” and “Operation House Call” — that help medical students learn more about disorders like Down syndrome by connecting students with people with disabilities and their families.
As Sie Whitten explains, it’s important for prospective parents of children with Down syndrome to understand “there is so much opportunity… not only for your child to live a good life, a productive life, a meaningful life, but also for you to even improve for the next generation what the future lives will be like.”
What Does Down Syndrome Prevalence Mean For Parents Of Typically-Developing Children?
It’s important to know Down syndrome doesn’t only affect parents and loved ones of people with Down syndrome. According to the Global Down Syndrome Foundation, around 38 percent of Americans already know someone with Down syndrome. And the current birth-rate figures suggest that this number is only going to increase. Additionally, according to the National Down Syndrome Society, the life expectancy of individuals with Down syndrome has more than doubled in the last 30 years, from an average life span of 23 in 1983 to 60 in 2016. People with Down syndrome are increasingly visible and active in our society, a direct result of a huge cultural shift from not long ago, when people with Down syndrome were often institutionalized or segregated from their peers. And our beliefs about what people with Down syndrome can do are also shifting dramatically.
According to Dr. Baumer and Dr. Davidson, of Boston Children’s Hospital: