As a mom of four—including a 2-year-old with Down syndrome—I experience two very different worlds when it comes to children with special needs.
The first is the world that Kate and I live in now. It’s a world full of possibilities. A world where family, friends, medical professionals—and even strangers in line at Target—celebrate her special gifts. It’s a world where people with Down syndrome can do anything they want: work independently, live independently, get married, accomplish their dreams. It’s a world of hope—where most people of all political, religious and ideological differences come together to celebrate and support the extra special qualities of that extra special chromosome. I love this world—and I couldn’t feel more blessed.
But that’s why I’ve had such a hard time reconciling the other world I visit sometimes—mostly at my OBGYN appointments.
It’s the world that Kate and I used to live in when she was still in my womb—a world that I continue to live in as I carry precious number 4 within me. It’s a world where Down syndrome is a source of incredible fear and even ignorance. A world where nurses hand me stacks of paperwork on prenatal testing as quickly as they determine my due date. A world where chromosome testing is pushed as a preventative measure like the flu shot. A world where “Down syndrome” diagnoses are delivered like death sentences.
Now don’t get me wrong, I certainly understand that many expectant parents choose prenatal testing as a measure of preparation. And I also understand that delivering and receiving a Down syndrome diagnosis is not easy for anyone. I have so much compassion for all involved. But there is an undertone in this prenatal world that I am particularly sensitive to. It’s a nuance in language, a subtlety in conversation, a suggestive tone that too often says: this baby is less valuable because of a disability.
I realize this most profoundly when I hear how quickly the topic of termination is brought up (and sometimes even encouraged) after a Down syndrome diagnosis is delivered.
Even in the book that I was given by my own OBGYN, Your Pregnancy and Childbirth, by the American College of Obstetricians and Gynecologists, almost all that is said regarding a positive diagnostic test is:
“If diagnostic testing shows that your baby has a disorder, you have two options. You may choose to continue the pregnancy. Or, you may end the pregnancy. There is no right choice in these cases.”
However, the chapter on positive pregnancy tests has none of this language—and no mention of options—only “next steps” for prenatal care. This is only one example of the subtle language that says: when a baby has a disability, we value their life differently.
In the world that Kate and I live in now, articles are published boasting statistics like, “99% of Adults With Down Syndrome Report Being Happy in Life.” But in the world of the pregnant woman, the statistics claim that the majority of women who receive a prenatal Down syndrome diagnosis terminate their pregnancies. It’s a vivid dichotomy—it’s the best time to live with a disability after birth, but the worst time to have one in utero.
But what I find most interesting? These worlds don’t often collide.
Rarely do I see large institutions who advocate for people with disabilities talk much about the abortion issue—and too rarely do I hear OBGYNs talk about the “life full of possibilities” of people with Down syndrome. And I understand this to a certain degree. Nobody wants to alienate people who feel differently about the incredibly sensitive issue of abortion—an issue that must always be approached with compassion and love. But when only a minority of parents who receive a Down syndrome diagnosis actually follow through with the pregnancy, it becomes something different than an abortion rights issue. After all, how can we expect to increase inclusion of those with disabilities once they’re born—when it’s so common to terminate these same people—based solely on a diagnosis—before birth?
I read a quote recently that spoke to me. Pediatrician, G. Kevin Donovan, said, “In some ways, medicine’s ability to map out a person’s genetic identity is outpacing society’s understanding of what it means to live with a disability, or raise a child with one.”
And it’s so true. Our medical understanding of genetic identity is so advanced—yet when it comes to understanding what it means to have or love someone with Down syndrome, so many are clueless. (Including myself. I had never met a person with Down syndrome before I had Kate.)
So what’s the answer for the world of the pregnant woman?
I think it’s the same thing that has made the world that Kate and I live in now so beautiful.
It’s truth. Relationships. Storytelling. It’s being aware of the nuance. Of realizing the profound difference in saying: “Prenatal tests are an option that help some parents prepare,” rather than “It’s important to get prenatal testing so you can determine if you’d like to continue with the pregnancy.” It’s delivering diagnoses with information and education—not just cold, textbook statistics—but real facts and helpful resources. It’s encouraging parents, doctors and all involved to actually meet families who have children with Down syndrome—and learn firsthand that the blessings far outweigh the challenges.
And it’s also important to remember that there are other options for those who just aren’t in a place where they are ready for this child—adoption being one of them. Remember this recent positive story in the press? Church Flooded With Calls After Posting Down Syndrome Baby Adoption Plea.
In the special needs world, there is a big push on “early intervention”—the idea that helping your child be all they can be starts from the beginning. I believe this is true.
I only hope that we can expand this early intervention to the earliest of days where children are growing most rapidly—the days where they are nestled in the comfort of their mother’s womb, where the more care, compassion and hope we can offer for their future makes all the difference to them, to their families—and to the world.