Reggie’s Advocate: Mom of a Child with Down Syndrome

Sharolyn Smith

Political Director
A 1999 European study stated that 90% of babies diagnosed with Down Syndrome before birth are aborted. However, the U.S. does not track that statistic thoroughly, so that number cannot reliably be used here.
That being said, about a dozen states do keep track of and gather information concerning prenatal testing. In 2012, one study estimated that 67% of babies diagnosed with Down Syndrome in the U.S. are aborted. Although 67% is not 90%, any figure is too high.
October was Down Syndrome Awareness Month. This was 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. Here is what she had to say:
What is your child’s name and age?
My daughter’s name is Regina. We call her Reggie. She is 9 months old.
How would you describe your daughter?
Reggie is effervescent. 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 obstetrician 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, saying, “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 people with Down Syndrome that are just plain wrong. They are not happy all of the time and 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 individual 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 Down Syndrome might also 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 
Down Syndrome 
pre-delivery?
I would tell her that I know it is earth-shattering to have expectations about what the child in your womb is 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 child, 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 has 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 what lies ahead, just as there was no way that I could have wrapped my head around how fiercely I could and do love her.
[The above interview with Sylvia was conducted by an Oregon Right to Life staff member. 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.]
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