This is essay two in the ‘Meet the Travelers‘ series highlighting families during Down Syndrome Awareness Month.

It had been a thirty-eight week and 35 pound wait before I met a little punkin wrapped like a mini burrito. She had a cute dimple and perfect heart shaped lips. What I didn’t know was that she had Down syndrome.

Surprise.

Birth diagnoses are not uncommon in the Down syndrome community. Those first days were the most challenging time of my life and set our family on an unexpected journey filled with peaks and valleys and sub valleys and crevices in the sub valleys and more peaks and mountains and everything in between. The best parts though were the fellow travelers we met along the way.

Through the barrage of visitors and community partners and hospital staff and social workers who I solemny greeted through a low-hanging life fog in those early days, one particular person stands out. She saw something through the fog and gently pushed me toward a new path, one much like the one she trod, and was always available to lend a nudge or a dose of needed encouragement.

She also stole my baby. But that’s a story for another time….

Meet Amy Van Bergen.

Amy Van Bergen has been a nonprofit leader since 1991 and served as executive director of the Down Syndrome Association of Central Florida until her retirement from fulltime work in 2016. In 2010, she helped found Down Syndrome Affiliates in Action, the first trade association for parent-support groups and she also served on advisory groups for both the National Down Syndrome Congress and National Down Syndrome Society and consulted with Global Down Syndrome Foundation recently on its medical care guidelines project pertaining to adults with Down syndrome. In addition to serving as an independent contractor for the Edyth Bush Institute for Philanthropy & NonProfit Leadership at Rollins College, Amy has also recently served as the interim executive director for Down Syndrome Affiliates in Action and the Down Syndrome Association of Brevard. Based in Orlando, she is the mother of five grown children, including her son Wils, who has Down syndrome and works as a law office assistant and is planning to get engaged in the next few weeks. (Shhh!)

Sharing “Facts” about Down syndrome by Amy Van Bergen, Guest Contributor

It is National Down Syndrome Awareness Month and every day for the last decade I read ‘facts’—by parents, Ds groups and medical experts alike—that include the ‘Did You Know?’ tidbit about the increased life expectancy for individuals with Down syndrome. And, of course, that is good news.

But what you don’t see very often is a related fact that is NOT good news: people with Down syndrome who are black are likely to die at half the age of white individuals with Down syndrome.

People with Down syndrome who are black are likely to die at half the age of white individuals with Down syndrome. #DownSyndromeAwarenessMonth

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That’s right.

According to our own Centers for Disease Control (CDC) going as far back as 2001, they reported that white people with Down syndrome have about twice the lifespan as blacks with the same diagnosis. So the groups and people sharing this fact are sharing misinformation if you happen to be non-white.

According to our own Centers for Disease Control (CDC) going as far back as 2001, white people with Down syndrome have about twice the lifespan as blacks with the same diagnosis. #DownSyndromeAwarenessMonth

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Shocking, right? Heartbreaking? Yes.

So what is the reason?

According to Dr. Sonja Rasmussen, who was with the CDC’s National Centre on Birth Defects and Developmental Disabilities when they issued the life expectancy report in their June 8, 2001 Mortality & Morbidity journal, these findings do not appear to be related to any increased severity in the condition in non-white populations. So most likely the difference is related to the quality/quantity of healthcare received. [Please note that Dr. Rasmussen, one of the leading researchers on life expectancy and Down syndrome here in the US, is now a professor at University of Florida and recently lost her own brother Mark, age 60, this past year.]

If you are looking for more, current details on trends and survival rates of people with Down syndrome, check out this 2013 publication: https://pubmed.ncbi.nlm.nih.gov/23248222/

For current details on trends and survival rates of people with Down syndrome: https://pubmed.ncbi.nlm.nih.gov/23248222/ #DownSyndromeAwarenessMonth

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So what’s the answer to the overall healthcare disparity, especially as it relates to life expectancy?

While the standard response is “more research,” the real answer is probably more about addressing the systemic racism that exists in all facets of our lives, especially with regard to healthcare and access when it comes to this issue. And fortunately there are national and international organizations, such as Global Down Syndrome Foundation, that have worked hard to increase federal funding into Down syndrome research at the National Institutes of Health and are on the forefront with soon-to-be-published medical care guidelines for adults with Down syndrome. https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/#:~:text=Today%20the%20average%20lifespan%20of,Down%20syndrome%20was%2025%20years.

So the next time you are about to share a “fact” about Down syndrome, especially one that might mean you are telling folks that their son or daughter’s average life expectancy is in their mid-20s, double check and rethink whether you are sharing  good news or bad news to newly diagnosed families.

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Are you a fellow traveler? To submit your story as a guest contributor, CLICK HERE