A history of Down syndrome - Hip Hip Harper Rae

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I didn’t research anything about Down syndrome for a couple months after Harper was born. To me research made it feel a little more real. I was content just focusing on taking care of my newborn. The little bit that I would look up I would actually use an incognito browser because I didn’t want Google to learn that I had a child with Down syndrome. I had a lot of anxiety over people seeing us as “the family with a child with Down syndrome” – but that’s a topic for another day.

After a few months I got to thinking that Down syndrome is a genetic condition that’s been around forever. It’s not like it’s a new thing and this led me to do a deeper dive into Down syndrome. I was curious about the history of the condition. What I found was quite interesting and shocking.

Before Down syndrome was known as Down syndrome

Down syndrome was around long before the term was coined and what I found about those early days is very interesting.

A closer look at the 1515 painting The Adoration of the Christ Child, created by Dutch painter Jan Joest of Kalkkar reveals two characters who appear to have Down syndrome. A shepherd and an angel possess physical attributes of Down syndrome. They are painted in places of honor within the scene. These depictions of the genetic condition reveal that individuals in late medieval times with Down syndrome may have been considered a part of society and were not ostracized.

Another interesting article I came across in my research was about child remains found in a medieval cemetery. Archaeologists discovered the skeleton of a child, who lived in medieval France some 1,500 years ago. After further tests, this particular skeleton was identified to have had Down syndrome. What is interesting about this finding is this body was treated in a similar way to the others buried at the site with respect and dignity. The researchers concluded that this meant the child may not have been stigmatized during life.

I found these discoveries to reveal that individuals with Down syndrome were once likely integrated into society.

Origins of the term Down syndrome

In 1866 John Langdon Down, a British physician is credited with first describing Down syndrome. Although others had recognized characteristics of the syndrome, it was Down who made the distinction. He actually called the condition “Mongolism” because he thought individuals with Down syndrome shared similar physical features to the people from the Blumenbach’s Mongolian race. Obviously, this term was inaccurate, but it wasn’t until the early 1970s that Down syndrome became the accepted term.

The extra chromosome

In 1959 a French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome. Chromosome studies were then developed to confirm the diagnosis.

Down syndrome or Trisomy 21 is a genetic condition that results in extra genetic material from chromosome 21. This extra genetic material alters the development and causes the characteristics associated with Down syndrome. Most people can identify physical traits, such as the upward slant of the eyes or small stature – that’s all I knew before becoming Harper’s mom.

Approximately one in every 700 babies in the United States is born with Down syndrome, which makes it the most common chromosomal condition. The cause for the extra chromosome is still unknown.

Down syndrome & institutions

In the United States the majority of children with Down syndrome were placed in institutions during the first half of the twentieth century. The medical community convinced parents that their child’s needs would be too great for them to raise them. So they were placed in large state institutions, where they were locked away from the rest of society. These institutions often had deplorable conditions. What would you expect of a child’s development if they were neglected and not provided adequate care?

In the 1960s some brave families started to challenge the medical community and bring their babies home with them instead of institutionalizing them. These families had no support or services, but they found one another and began programs in church basements and other community buildings. This is how the National Association for Down Syndrome was formed.

Largely credited to the end of inhumane practice of institutionalizing people with Down syndrome, the life expectancy has jumped from 25 years in 1983 to 60 years now.

Medical issues & Down syndrome

Babies with Down syndrome can have some significant medical needs, but many can be helped through different surgeries, medicines and treatments. As I read about the history of Down syndrome this part really shook me to my core.

In the 1970s and early 80’s – that’s really not that long ago – many Down syndrome advocates were on the front lines fighting against some appalling medical practices. At the time some medical professionals recommended that babies with Down syndrome not receive life-saving medical interventions and surgeries. Instead orders were written to not feed the babies, which meant that babies were starved to death in corners of some hospitals. Finally, in 1984 the U.S. Congress passed legislation prohibiting the withholding of “medically indicated” treatment from any child born with a disability.

As I write this now it still stirs heavy emotions for me. While I think most reading this would be saddened over hearing this treatment of a new life, it is so much more personal now having a child with Down syndrome. To think that not that long ago medical professionals would even suggest withholding life-saving treatments from my baby girl is appalling. Life is valuable no matter what.

A prenatal diagnosis

When I was pregnant with Harper, we chose not to get any genetic testing. We knew that whatever the test said it wasn’t going to change anything for us. Nevertheless, we were still surprised with our at-birth diagnosis of Down syndrome and experienced the shock of an unexpected diagnosis. So, personally I have not dealt with the processing of a prenatal diagnosis.

What I do know is that life is valuable. From the moment our children are born, we don’t know their future. This applies to a child with Down syndrome as well. The Down syndrome diagnosis often paints a bleak future for the child, but that is not a certainty. In fact, a survey of people with Down syndrome ages 12 and older revealed that nearly 99% of people with Down syndrome indicated they were happy with their lives; 97% liked who they are; and 96% liked how they look. How amazing is that?

The journey ahead

I learned a lot as I gleaned through article after article on the history of Down syndrome. A full range of emotions was also experienced through this research effort. I know that everyone who comes into contact with Harper loves her. She has a way of attracting people to her when we are out in public that I’ve noticed. She brings so much joy and life.

However, when people think of Down syndrome it is still very abstract and removed from a person. I think this is why receiving a Down syndrome diagnosis brought up some much emotion in me and others – there’s just a lack of understanding. When we lump people into a category, it depersonalizes and alters how we think about one another.

I’m so thankful for the trailblazers in the Down syndrome community. It’s because of them that I got to take my baby girl home. They are the reason she has easy access to therapies at such an early age. Their stories keep Harper’s future bright.

Harper’s diagnosis has opened my eyes to so much in the world. While there has been a lot of progress, there is still room for improvement. I want Harper to belong. Don’t we all just want to be included?

October is Down Syndrome Awareness Month and we will be celebrating by participating in the Down Syndrome Association of Greater Richmond’s Annual Step Up for Down Syndrome 5k & Family Festival on October 5, 2019. We are really excited and thankful for those who have signed up or donated already. There is still time to join team Hip Hip Harper Rae: https://www.ds-stride.org/dsagrstepup/profiles/team/HipHipHarperRae

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