"But if you do, just abort," The Stereotype-Based Opinion of Medicine
Earlier this year, a CBS News report shocked the nation with its exposure of the discriminatory abortion trend. According to the report, nearly 100 percent of unborn babies who test positive for Down syndrome are aborted in Iceland. According to CBS, the rate in France was 77 percent in 2015, 90 percent in the United Kingdom, and 67 percent in the United States.
“I was furious, and I let the Doctor know that he was discounting my current child’s life with his recommendation, and that as a medical provider for individuals with “differences,” he should value their lives more.”
Let me share a bit of our experience, so you can understand why these rates might be so high.
Rory's type of Down Syndrome is not hereditary. We were tested and do not carry the gene to pass Down Syndrome to our children, nor does our son. It was a random occurrence that all people making babies have a chance at experiencing. At my age of conception, having a child with Down syndrome was a 1 in a 1,000 chance.
Sometimes, after you have a child with a "genetic mutation," you see a geneticist. One of the required conversations when you see a geneticist is "family planning-" regardless of your plans to have, or not have, more children in the future.
We were working our way down the list of topics and came to the "family planning" conversation. We were told, "it would be a one in a million chance for you to conceive another child with Trisomy 21 (Down syndrome), but if you do, just abort."
My daughter was with us, smiling in my husband's arms as those words were spoken. I was furious, and I let the Doctor know that he was discounting my current child's life with his recommendation, and that as a medical provider for individuals with "differences," he should value their lives more. This is just one of the many negative experiences with medical staff that we have had after having Rory. These interactions left us feeling as if her life wasn't valued, and our life was going to be full of struggle and strife. Let me tell you, this is the furthest thing from the truth.
Rory is joyful, loving, active and engaging. She is everything our son was a baby, and everything I see her peers being to their families.
I can't say the thought of abortion wouldn't have crossed my mind if we would have had a prenatal diagnosis. Having a child with Down Syndrome is not something we expected, and does come with its challenges. But it would have been a thought rooted in fear, fueled by incorrect information, and dated perceptions of individuals with Trisomy 21 (Down syndrome). Correct information drives out fear. Experience drives out fear. Love drives out fear. We need to provide parents with real-life examples of what living and loving someone with Down syndrome looks like. Giving them a chance to love their babies, and learn that there is so much possible for their child than meets the eyes.
“A majority of physicians and genetic counselors have said that they would abort following a prenatal diagnosis for DS [Down syndrome], which no doubt affects how a diagnosis is presented. Other recent studies also have found that a significant percentage of adults, youths, and physicians still hold outdated views about DS and would prefer that children with DS were segregated from, rather than included in, the community and typical classrooms. Therefore, those who choose to abort often are seeking to avoid an inaccurate, uninformed, and overly negative view of a life with DS [Down syndrome], which is not supported by the current research.”
Our life is not horrible in any way, we are very happy we have our daughter. I can confidently say if a parent was given factual and up to date information, paired with supportive health care providers, these abortion rates would not be as high.
People with Down syndrome are as capable as we allow them to be. When treated with love, respect and expectation from birth by their families, schools, medical care providers, governments, and societies, these individuals can flourish just as their typical peers do: meeting their individual potential. All life has value, it is experienced in the form of physical/intellectual output, some is felt from personal interaction, and some is learned from witnessing the impact a life has on another.
If I have learned anything from this experience, even if someone is severely disabled- fully paralyzed, mute, etc.- they can bring joy and lessons to life that those unlike them couldn't. It is most likely the caregivers who have the honor of witnessing this miracle, not because they spend the most time with them, but because they view these children through a lens of love. We build our collective character by extending love and acceptance, allowing the opportunity of life to those that at first glance, might not look like they deserve it.
Loving these children isn't something to be afraid of. I came to a point in my emotional journey of processing Rory's diagnosis, that I knew publicly sharing personal bits of our story could possibly save a life. Rory will give possible parents, and current parents, of a child with Down syndrome correct information, experience, an example, and most importantly, she will show them her unconditional love. No one can tell you how your baby will turn out, only time can and will answer all your questions. You must ask or tell yourself, depending on the situation you find yourself in, that you are capable of great love in the face of hardship and fear. You are capable of so much, and so is your child. Whatever your choices in life may be, allow them to come from a place of sacrificial love.