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Words from an Advocate: Mom of a Child with Down Syndrome

A 1999 European study stated that 90% of babies diagnosed with Down syndrome before birth are aborted. However, most of the U.S. does not track those statistics so that number cannot reliably be used here.

That being said, about a dozen states do keep track of and gather information around prenatal testing. In 2012, a study used a mathematical model to estimate that 67% of babies diagnosed with Down syndrome in the US are aborted. Although 67% is not 90%, any figure is too high.

October is Down Syndrome Awareness Month. This is an opportunity for the pro-life community to advocate for these remarkable people and their families. To participate, we interviewed Sylvia, whose lovely little girl happens to have Down syndrome:

What is your child’s name and age?

My daughter’s name is Regina (“Reggie”). She is 9 months old.

Sylvia and Reggie

Describe your daughter in one or two sentences.

Reggie is effervescent in that her radiant smile is contagious and impossible to resist. She is also a courageous heart warrior. She has overcome more in her short nine months than most have done in their entire lives.

What did your doctors say when Reggie was diagnosed?

I was not overtly encouraged to have an abortion. However, there was a palpable push in that direction by my OB and my perinatologist. My OB knew that I would never have an abortion after caring for me for my four previous pregnancies. I had made my stance on abortion clear. When she delivered the news of Reggie’s diagnosis, she still made an ominous statement. “This is a big deal, and you have four other children to consider.”

My perinatologist did not mention termination, but she did seem more preoccupied with Reggie’s Down syndrome than with her life-threatening heart defect. She also told us we were “courageous” when she asked us what we wanted to do and we answered, “Continue the pregnancy,” if an abortion was what she was implying.

If there are one or two things you would like to say to people or for them to know, what are they? 

There are many stereotypes about Down syndrome that are just plain wrong. They are not happy all of the time, they have a wide range of emotions just like anyone else. Their health issues and intellectual disabilities can vary widely, but no one has “mild Down syndrome.” Every individuals with the main type of Down syndrome has three copies of his or her 21st chromosome but how that translates varies. Some individuals have to live at home with more oversight. Some live independently, even marrying and owning their own businesses.

Children with Ds might also have face other challenges. Reggie was born with a very serious heart condition associated with her Down syndrome. It was repaired when she was four months old and she is now healthy and thriving!

What would you say to a woman whose unborn baby was diagnosed with Ds pre-delivery?

I would tell her that I know it is earth shattering to have expectations about what the child in your womb was going to be like, and then feel like you have to abandon all of them. Trust me when I say that you will be shocked one day at how this child can fulfill those expectations after all. Reggie is my fifth, and other than the heart issues, raising her in all the ways that matter has been no different than raising any of my other children. They are all completely different. Each have their own set of challenging issues and wonderful, adorable traits.

So please, as hard as it is, try to enjoy this pregnancy as much as you would any other. Spending Reggie’s pregnancy fixated on all of the what-ifs and worst case scenarios is my biggest regret. There is no way to predict that. Just as there was no way that I could have wrapped my head around how fiercely I could and do love her.


Oregon Right to Life advocates for the most vulnerable human beings whose right to life is denied or abridged under current law. We work to reestablish protection for all innocent human life from conception to natural death.

10 Comments

  1. Ruth on October 11, 2017 at 2:31 pm

    I am a Registered Nurse. For many years I worked with an agency that cared for the disabled. During that time I became well acquainted with many people with Down Syndrome. Their skills, interests, abilities, and moods were varied, so were their hopes and dreams, much like the rest of us. Their desire for social integration, friendship, and love was much the same as my own. Every one of us has varied talents and abilities. What makes us think that we have the right to end an unborn babies life just because he or she may have a disability? Each baby is a lovely gift. As the mother of several children I can vouch for the fact that I love my adopted disabled child as much as my biological ‘normal’ children.

    • ORTL on October 11, 2017 at 2:45 pm

      Thank you so much for your comments, Ruth! Such a wonderful perspective you have.

    • Terri on October 11, 2017 at 4:58 pm

      I agree 100%!!! Thank you for sharing.

  2. Liz on October 11, 2017 at 10:46 pm

    My son with Down Syndrome is now 24 years old. In addition to his part time job, he works as a volunteer in the community, swims in the US Masters Swim program, and runs the children’s library at church. It has been a labor of love, heart, and soul for me and my husband to bring up our son to this point in his life, but we wouldn’t trade it for anything. The decision to deny life to a person with this disability is one based on misinformation and
    unfair stereotype. I would advise anyone who is faced with this kind of decision to first talk to parents who are years ahead on this journey, to find out what life is really like with Down Syndrome in the family. We are the ones who can truly speak from first-hand experience.(And it’s not so bad, contrary to what those who really don’t know might think!)

    • ORTL on October 12, 2017 at 8:13 am

      That’s so wonderful, Liz! Thank you for your “labor of love.” Sounds like he has gone on to bless others.

  3. David Klaus on October 12, 2017 at 8:04 am

    As a bus driver for special needs students, I have had several Down Syndrome students on my bus, and I can attest that they are AMAZING kids! They amount of love these kids display moves me daily! It is a travesty that 67% of DS babies are killed through abortion before they even have a chance to share their amazing gift with the world around them!

    • ORTL on October 12, 2017 at 8:12 am

      Thank you for sharing!

  4. Liz's son on October 12, 2017 at 3:50 pm

    I am Liz’s son from the post above. Jesus has been giving me an abundant life. (John 10:10)

    • ORTL on October 12, 2017 at 7:11 pm

      Thank you for chiming in, Liz’s son! So glad your mom chose life! 🙂

  5. Doug Alvey on October 23, 2017 at 1:26 pm

    When I was @9months old, my mother was diagnosed with Tuberculosis and whisked away to the Salem Sanitarium. The County said my Dad couldn’t take care of the four of us and intended to split us up. Family friends (this was a logging community) took us in, until grand-parents could get in place. The family that took my youngest sister and me, decided they’d like a baby of their own and David was born a year later. There was no pre-natal testing in 1955 and David’s parents lived on a safe, isolated farm. His mother (a published School chef) was hired by the 1 through 8th grade local school, where David could be with her. His dad quit logging, when the Bus Driver job became available and he and David would do that every day. Then the STATE decided that they could do a better job raising David and sent him to multiple “Training Facilities” and “Homes”, well away from his family, in Salem. Eventually, the Coos Bay Schools got government “Special Education” money, and David was put into that. During the Special Ed. years, David lived in town with our family and went home on weekends and with his family (whom we visited often) in the Summer. Yes, David was different, but with that “Christ-like love” that the preachers always talk about. Even the mean Bull his dad was raising, let David come into the pen and pet him. I’ve talked with other Ds parents, and they’ve seen the same in their kids. David was only unhappy when the STATE got involved in his life. Even then, he loved everyone. As his playmates (and my parents), we all loved David. I think we need to investigate Down Syndrome as a Different Ability, rather than a Dis-abililty. Unfortunately, there are few adult Ds people. We lost David to leukemia, when he was 14.

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