When an expectant mother learns that there is going to be something considered “abnormal” with her baby, the emotions run high. The Pressure to abort a baby with Down Syndrome is very real and the information provided is often very negative and outdated.
Meet Mistie, Mistie was young and healthy when at 21 she learned that her baby was going to be born with Down Syndrome. The pressure to abort a baby with Down Syndrome came at her from every angle and on multiple occasions, here is how the story goes…
We finally got pregnant! It’s a little crazy considering I was only 21, but the excitement was still there. I had recently learned about some hereditary medical issues and if I wanted to have a kid then the possibility of getting pregnant was higher earlier in life. My husband and I both had a year and a half left of college, but we decided to start trying any way. After months it finally happened; we were so excited!
During my early weeks of pregnancy I had this feeling I couldn’t shake though; I needed to go to the doctor to double check on the baby. I was lucky enough to have an amazing mid-wife who calmly explained that it’s a first pregnancy and everything looked fine. Even after that appointment though my gut didn’t settle and I requested to see a specialist – I just felt like I needed to. After some hesitation my mid-wife agreed. I was 12 weeks pregnant and decided to take a first-trimester genetic screening blood test. We waited about 10 days and then we got the call.
“Hi Mistie we got your results in, do you have a minute?” Said the geneticist
“Yes!” I replied
“Well do you want to hear the good news or the bad news first?”
“. . . Uhhh bad I guess”
I didn’t actually think something was going to be wrong.
“Well the test came back and the fetus has an extra 21st chromosome – it’s known as trisomy 21 or Down Syndrome.” She said.
” . . .Oh okay uh . . .” I stammered.
“Would you like to know the gender? Or should we just talk about the termination process.”
Termination? I was so confused – I thought I knew what Down Syndrome is but . . . I wasn’t for sure. It was her saying ‘termination’ that really threw me off. I was just silent; I honestly didn’t know what to say. My heart hurt and my body felt unbearably heavy. The words Down Syndrome just keep ringing in my ears.
“About 90% of Down Syndrome diagnosis’s end with termination worldwide; it is a really common solution and we can take care of it as early as tomorrow.” She said.
“No – no I want to know the gender.” I spit out.
“Oh. . . Okay . . . it is a boy.”
“A boy?!? I am having a boy! Wow!”
The biggest smile appeared on my husband’s face; he always said that he didn’t care if it was a boy or a girl, but he’ll admit now that he really wanted a boy first.
“But what is Down Syndrome?” I asked
“He has an extra 21st chromosome which will affect him physically and mentally throughout his entire life.” She responded. “There are varying degrees of functionally but there is really no way to tell if he will be at a high level of functionally or severely low level. He might be able to go to school and get a simple job but he also may never be potty-trained, learn to walk, he might require an endless amount of surgeries, some of them are vegetables and can’t do much of anything . . .”
She went on and on and on with the negative possibilities. I just really wanted her to stop talking.
“Well some of that makes sense; but you can’t tell the future or value of someone’s life by just a simple diagnosis about them.” I said.
“Well yes but you need to think about your future.” She fired back. “You’ll be taking care of him his whole life. He will always live with you. Do you want that? You are really young and just finishing school – you need to think about your future and all the things you want to do. You can terminate your pregnancy up to 20 weeks and if you do it soon no one will even know that you were pregnant; and if someone does know you can just say you had a miscarriage.”
“I’m okay. Thank you”
And with that I quickly ended the phone call.
Shaken up, my husband and I took a breather, talked about our little boy, and immediately dove into some research. It was more helpful than we could have imagined; Down Syndrome didn’t seem that scary anymore. ALL of what we read online was fueled with positivity, showcasing the incredible lives those with Down Syndrome can lead.
After this phone call experience I started to question a lot of things in life, how I view them, and what a true successful life is. Is the value of a life based on a job title or a specific life style? Is someone’s career path what decides how valuable their life is? That just can’t be true. No matter who you are you have value, you matter. Life success isn’t counted by the money you make, or how many people know your name. In that moment I decided that a person who knows how to be kind and love others has the most valuable life.
What would a little boy with Down Syndrome know about kindness and love?
I was very unaware at the time just how much Jed was going to teach me more about being kind and loving others.
I received four more phone calls before I hit 20 weeks of pregnancy. Each phone call was, for the most part, the same. They would ask me if I was depressed, tell me how many more weeks I had left to terminate, and once they even asked if my husband was forcing me to have this baby. During every call I had the phrase ‘Fight for him Mistie – Fight for him!’ repeating in my head. I felt like I was fighting to show that my son wasn’t just a statistic. At the same time I felt like a crazy person; was I the only woman in the world to find out prenatally I was having a baby with Down Syndrome and not get an abortion??? I would cry every time after receiving a phone call. I would tell myself that it can’t be that bad to have a kid with Down Syndrome . . . it just didn’t make sense.
We ended up only telling a few family members and select friends about the diagnosis. I didn’t want everyone judging Jed before they got to meet him. I wanted everyone to fall in love with Jed and not let his Down Syndrome decide for them. I also was scared that some would react badly knowing I chose to keep my baby with the knowledge that he would have Down Syndrome. Because of the extreme pressure to terminate, I often would feel like Jed was unwanted. That feeling has followed and haunted me for the past four years. It is the reason it has taken me four years to share our diagnosis story.
If I could go back I wish I would have gotten the chance to celebrate Down Syndrome earlier. My worries were based on outdated information; it was being preached to me that he would be a burden when in reality, he is a true miracle that has taught me more about kindness and love than I thought imaginable.
One of the best days of my life was when I finally got to meet Jedediah in person and hold him in my arms; it was such a relief. At first glance I did see ‘Down Syndrome’ in him, but after a quick blink of an eye that was gone; all I saw was my beautiful baby boy. Even now I have difficulty seeing the ‘Down Syndrome’ in his face; people will at times point out to me but, he is Jed. Down Syndrome is a box I check when we go to the doctors – just a simple fact about the cutest little blonde boy there is.
Mistie Ellsworth is a young mother of two and her oldest son, Jedediah, happens to have Down Syndrome. Jedediah, or Jed for short, is three and a half and a big brother to Wyatt, who will turn one next month. Mistie enjoys doing home therapy with Jedediah, blogging, traveling and going on daily adventures with her boys. Check out her blog here and follow along with the family on Instagram @jedediahsjourney
I’m so sick and tired of the bullying doctors and their lack of training on how to deliver the diagnosis. It’s time that this stop.
I’m working on a plan…
Agreed! I know that Jen Jacob over at DSDN is speaking before a panel of physicians at a physicians conference, I am anxious to hear how it goes!
Abortion being offered as a “solution” to Down syndrome. I’m so tired of that mindset.
I couldn’t agree more!