A few weeks ago, I shared with someone who did not know of Everett’s Down syndrome diagnosis. It took me a couple days to shake off the conversation but in light of World Down Syndrome Day, his words are once again ringing in my ears.
“Everyone should have a choice.”
I am quite certain my point across was misunderstood. See, everyone currently does have a choice. Landon and I chose not to do prenatal testing because it didn’t matter. We weren’t going to terminate no matter what came of that test. And everyone who does have a prenatal diagnosis currently has a choice, or else termination rates would not be 71-100% in the US and other developed countries.
What I was trying to say was that people given a prenatal diagnosis are told all the bad things, based on old data when people with Ds were institutionalized and not given proper health care for issues like heart defects. Anyone would fail to thrive if you locked them up in a room and told them they won’t amount to anything.
It’s hard to say how many of the terminated pregnancies would have gone to full term had the doctors delivering the news said “Congratulations” instead of “I’m sorry” and went on to say all their child could accomplish instead of all the things that could go wrong.
This is something I’ve thought about since we received Everett’s diagnosis. What if parents today were told “I’m sorry, your 46-chromosome child has a:
- 1 in 2 chance of cancer if they are female and 1 in 3 chance of cancer if male
- 50% chance of getting divorced if they choose to marry
- 1 in 44 chance of autism
- 10-15% chance of infertility if they and their significant other try for a family
- 3 in 10 chance of a teen pregnancy”
And those are just statistics I could easily find. How many people drive drunk and get a DUI or seriously hurt or kill someone? Get addicted to drugs? Move home after college and never leave? We all know someone who answers these questions.
But instead, we all have high hopes for a 46-chromosome child. They could cure cancer! They could excel in sports and get a scholarship to a D1 school! Maybe they’ll be CEO of their own company! Have you yourself done any of these things?
I really am not trying to be a Debbie Downer by telling you that your typical child probably won’t amount to the dreams you had for them when they were in-utero. I am trying to understand why 47-chromsomes has such a negative connotation.
I did try my best to share this but I didn’t have the statistics. He replied that “my wife is a faith girl too.” Again, obviously the termination rates speak to the options available to the parents. It is not an argument about whether you think termination should be legal. My whole point is if you are being provided accurate information to make that decision!
Google Down syndrome symptoms. Look at the images. I remember searching for pictures of real babies and children with Ds when we were waiting for Everett’s test results. I couldn’t find any. Since then, I’ve found an entire community on Instagram full of people of all ages with Ds who play and go to school like typical kids, who own their own businesses, who advocate for people like my son. I would never want to be the doctor who told any of their parents “I’m sorry.” I’m so grateful their parents didn’t listen and made their own choice. These are the children and adults I look up to. To know what my son could be capable of. But I am also learning about ableism from them. It’s not about what he accomplishes, it’s about who he is…
Everett is the best kisser. He has the cutest laugh. He likes green peas and butternut squash. Everett loves books. He keeps us on our toes. He likes to make silly faces with me. Everett is just like a typical baby – he wants to know we are there for him. Most of all, he wants to be loved, just like everybody else.
To this person, I would like to ask if his children amounted to what he had hoped for their futures? And if not, does he wish he could go back in time and make the choice to not have them?