I started preparing for this post in early January, knowing it takes me time to wrap my head around what I want to share about Down syndrome & my experience so far - my gal Paige is 2 ½ so we’re still pretty new to DS.
I started writing out a few ideas - how I received the news that Paige may have DS while in the NICU & the trauma around how it was delivered. A recent experience at a school parent’s meeting of my typically developing daughter where I had to process some of the accidentally ableist parts of her story.
Then I took a step back & asked myself what it was I really wanted to communicate.
What’s the most important message that I can share for Down Syndrome Awareness Day?
I came back to the line I wrote in last year’s post:
The world is a better place because there are people who have Down syndrome.
Then I took some time to think about why I believed that this is the most important message I can share.
I came to this conclusion:
Because the public perception of having a child with Down syndrome is so negative, the rates of families choosing to not continue on with their pregnancy after a prenatal diagnosis is growing.
Let me be clear. This is not a discussion about abortion. I think we can agree that it’s a very important topic, but not the focus here today.
It’s vulnerable to write such a personal post, but here we go!
Let’s start here.
What is Down syndrome?
Down syndrome, or Trisomy 21 is a genetic disorder where individuals have an extra chromosome in each cell. So instead of the typical pair, my daughter Paige has three copies of chromosome 21 in each of her cells.
This happened at conception & is accompanied by increased risks for many health issues in addition to developmental delays in many areas.
Because of these potential health issues & delays, Denmark boasts that the percentage of families having a child with Down syndrome is down to 1% due to more sophisticated prenatal testing & diagnosis. In 2017, only 4 families who got a prenatal diagnosis decided to continue on with the pregnancy.
According to an article by David F. Forte on Public Discourse from 2018,
“Estimates vary, but in the United States, abortions of children whose Down syndrome is detected in the womb are in the range of about 67 percent.” (1)
This, compared to an estimated 18% of all pregnancies ending in abortion in the United States. (2)
I believe this percentage is so high because of a misperception of what Down syndrome is.
Yes, having a medically complicated child is hard. Scheduling therapies, seemingly constant health scares, hours spent on the phone with the Health Insurance customer service agent trying to figure out yet another obfuscated bill, feeling emotionally triggered in parent meetings.
But this is so far from the whole picture.
A study in 2011 in the American Journal of Medical Genetics found that 94 percent of older siblings expressing feelings of pride towards their sibling with Down syndrome and 99 percent said they were happy with their lives and 97 percent liked who they are. (3)
I’d be curious to learn these statistics for the general populate, but my guess is they’re not nearly this high.
An article by Mark W. Leach states that,
“The further significance of the new research is that it addresses the concerns of mothers who have aborted following a prenatal diagnosis.
“These mothers were concerned that the condition would be an excessive burden on them and their other children, and that DS may be too much of a burden for the child him- or herself.
“The three new studies directly counter these concerns and more, as they reveal a truth not often considered: a child with DS will almost always be a positive force in the lives of his or her parents and siblings.
“The studies found that 79 percent of parents felt that their outlook on life was more positive because of their child with DS.
“For siblings, the response was even greater, with 88 percent feeling that they were better people because of their siblings with DS.” (4)
He goes on to say in the same article,
“…sharing accurate information about DS, the newest of which is overwhelmingly positive, can and will change expectant parents’ views following a prenatal diagnosis.” (4)
Antidotally, my daughter Paige is so much more than her medical complexities.
She is funny. And she knows it.
She pretends to share a toy but at the last second take it away with a sing song “no no no” and a satisfied finger wag.
When she feels disconnected from me, she grabs my face in her hands & demands I slow down and just look at her with her goofy grin that takes over her whole body, not just her face.
We recently were at an event where a bored & sad little sister we didn’t know sat on the sidewalk pouting. Paige walked right over to her, sat down next to her & put her hand on her arm. Paige’s kindness continually spills out onto others.
When we walk out of her preschool together after class she smiles & waves to every single person she sees and waits until they notice her & wave back.
Tuesday is Down Syndrome Awareness Day.
I'm choosing to use my biggest place of influence, my business, to bring awareness to my experience with Down syndrome as well as to share with you the opportunity to support not only fair wages for Purse & Clutch artisans, but to also support an amazing art gallery that truly aligns with my views of my precious daughter.
Now through Friday, we're donating 21% of sales to Sage Studio, a gallery & studio for artists with disabilities, working to create a more inclusive world where everyone belongs.
Sage Studio believes in a fully-inclusive world where our differences are not just accepted but celebrated, embraced & encouraged.
(1) David F. Forte on Public Discourse from 2018
(2) United States Congress Joint Economic Committee https://www.jec.senate.gov/public/index.cfm/republicans/2022/3/down-syndrome-and-social-capital-assessing-the-costs-of-selective-abortion
(3) American Journal of Medical Genetics, Self-perceptions from People with Down Syndrome, Brian G. Skotko Susan P. Levine, and Richard Goldstein, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740159/
(4) Mark W. Leach (https://www.thepublicdiscourse.com/2011/10/4090/)