For those with Down syndrome: it was the best of times, it was the worst of times

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.

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15 Comments

  1. Your witness is beautiful. Prenatal testing has robbed the world of too many of these precious children, and their parents of the profound honor and opportunity of raising them.

  2. Joel Fink

    As a father of four children, the youngest born with Down Syndrome, this article hits home. We never even thought for a second about not bringing this child into the world. She has enriched our lives, and the lives of those she has come in contact with. Has it been a struggle? Yes. But has it been worth it? Yes. Words cannot express what she means to my wife and I, and our three older children. That doesn’t take into account the hundreds of individuals who also express the love and joy they see in her. We are simply better people for having been fortunate enough to know her, and share in her life.

  3. Lauren Peege

    Your writing and message are beautiful and touching, and I could not agree more. Please continue to write and speak out every chance you get. It is only by real, heart-felt communication that the children born with Down Syndrome will be understood. God bless you and your family, and that little one you are carrying.

  4. amy

    I love you Lauren! You are such an inspiration to so many and I hope that your blogs reach many more people that need to hear you positive thoughts! I hope all is going well with all the kiddos and wee little one as well!

  5. Susan

    WOW what a beautiful article, Lauren. So very well said.
    As a mom to three beautiful “grown” kids, the oldest having Down Syndrome I never ever thought for a moment that Jason would not excel in life. Today he lives independently, works full time for a local bank in the mailroom, sits on the board of our local Arc, is a valued member of the Knights of Columbus and our church, has a circle of friends (all non disabled) that value him and include him in everything and enjoys life more than anyone I know. He is 35 years old. And tonight he will give a speech to 400 people about life for people with disabilities. How the doctor told his mom he would not be able to do much and he should be put in an institution. About how people with disabilities are more ALIKE then different, they all want a good job, a good place to live and a good friend. Thankfully, Jason was able to achieve all that – his mission is to make sure others have the same opportunities. Continue your good work bringing awareness to DS through your blog – THANK YOU for all that you do!

  6. Heather

    Great post. My #3 also has Down Syndrome and my 4th was born a couple months ago. I struggled with the new testing. I wanted to get genetic testing to be prepared and because I love the hospital I deliver in but it does not have a special care nursery. But also I didn’t want to take part in a test that might be a major catalyst to termination of pregnancies with a T21 diagnosis. Luckily I didn’t run into too much testing talk or subtle negativity to the possibility down syndrome during my pregnancy. Maybe it was because by the 4th pregnancy you stop reading all the pamphlets and pregnancy books being a 3x veteran and all. But maybe it was because everyone knew I was already in the Down Syndrome club and that I didn’t see it as the death sentence. Hopefully their sensitivity wasn’t because they were afraid of hurting my feelings or my retaliation if they subtly questioned my son’s worth but rather they now see Down Syndrome differently when they see the love and normalcy of our family.

  7. THANK YOU! I endured this scary world of “knowing glances” filled with pity. Doctors shook their heads at me when I frequently repeated that I was pregnant and remaining sonubtil God decides differently. We have a long way to go to support women carrying special children! Sadly, God did take my angel home before I got to hold him.
    Thank you so much for this post!

  8. I too am a mother with a down syndrome Child. I find him a real blessing and I find him at times to be little easier to handle than my other 5 children. for he is not demanding me to spend money on him. the only think he ask of me is to meet his daily needs. food clothing and shelter but most of all love. He is amazing how even if at 12 he does not talk get find away to let you know what he might need. Like going to the freezer to get a fudge bar. He is such a sweet little boy and I am so thankful that god choose me to be his mom.

  9. Christine Kessler

    THANK YOU FOR THIS!! You have put into words exactly what I have been piecing together in my head over these past 6 months. My 3rd boy who is 4mo old has DS and we knew prenatally because of a NIPT. {We joke that it’s not his 3rd 21 chromosome that we are worried about – it’s the 3rd Y he brought to the table:) } Anyhow, after the diagnosis, I felt as if the medical community almost had an agenda for me to terminate – I kept being reminded about the legal option to abort, but not about my option to keep the baby – quite discouraging.

  10. Lauren,
    This is one of the best article I’ve read articulating the issue of prenatal testing / abortion for Down syndrome (and I’ve written a few myself)! Thank you very much for writing it. I will definitely share with others. God bless!

  11. Kuntodi

    We only need to prepare. I think that’s the most wise opinion. We don’t have right to end or continue the pregnancy. God never fail in creating something, so baby with Down Syndrome is not a failed creation of God. And we absolutely don’t have right to decide the baby to be unborn.

  12. Delores Townsend

    I am so thankful for all the information available to parents these days. My daughter is 55 , and when she was born there was so little info on what to expect, what help was available ( little to none)–it was a very lonely and scary experience. My pediatrician said “just put her in an institution and go on with your life.” Having her in our family has been the most rewarding thing that ever happened to me. Of course there were difficulties and I had to fight for services for her that were automatic for most children, but there can be challenges with any child. I would not trade my life with her for anything!

  13. Stephenie

    This hits the nail in the head about the dichotomy of the two worlds. Looking back now, I feel that the delivery of the doctor influenced my fears and increased my anxiety through the rest of my pregnancy and for no good reason. (I had nuchal translucency done at 13 weeks). That will always remain with me. And makes me angry how I allowed myself to be consumed with the fear and stress of having a child with DS. I wouldn’t change her one bit. I love the fact that she has DS. I feel most proud of it because I feel like we have a wonderful world of people who have shown us the importance of acceptance of special abilities and qualities and its been an amazing first year with her for us.

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