The Up Side of Down Syndrome
Last winter, my sister in New York found out she was pregnant with her fourth child. She was 42 years old and her husband was ten years older. They were surprised that they were able to get pregnant, but excited about the prospect of a new baby.
My brother-in-law hoped for one more boy to even the score (the girls were currently in the lead, 2 to 1). Although my sister was carrying some extra fluid and doctors detected a low baseline heart rate, there were no signs to indicate anything abnormal about the pregnancy despite numerous sonograms due to “advanced maternal age.” At the 20 week ultrasound, they discovered they were having a girl, and decided to call her “Maggie.”
Maggie arrived safe and sound after a normal delivery, but the doctor noticed immediately that her eyes indicated she had Down Syndrome. My sister and her husband were very shaken – what an unexpected turn of events! How do you take news like that except with confusion, sadness, and fear? What would their lives be like now? What would they need to do for this child? And being in their early 40’s and 50’s, were they up for the extra challenges they would face?
Given their faith, their view of all life as a gift, and the overwhelming support they received from family and friends, it did not take long for them to recover from the shock. They had already fallen in love with their beautiful baby girl. News spread quickly to relatives, friends, and other acquaintances, and gifts began pouring in – decorated burp cloths, embroidered blankets, matching outfits for all of the kids, and the list goes on. But the biggest gift by far would prove to be Maggie herself.
Personally, my experience with Down Syndrome (and all disabilities for that matter) has been very limited. I would even say I’ve feared people with mental handicaps because of my own ignorance and an uncertainty of how to act around them. And of course our society as a whole fears them as well, which is why, according to every site I looked at online (Wikipedia, Lifesite news, First Things, etc.) abortion rates of pregnancies that tested positive for Downs Syndrome were over 90% (that includes both the U.S. and Europe as well). Some studies showed as high as 98%. Those numbers are staggering to think about, particularly when I see a precious face like Maggie’s and wonder why people are so afraid of having a beautiful baby like her.
I’ve gotten a first-hand education on Maggie over the last couple of weeks, as my sister had to have surgery requiring a six-week recovery period so my mom brought Maggie down to New Orleans for an extended visit. It didn’t take long for her to capture all of our hearts.
She is eight months old now and still trying to learn how to sit and crawl, but she is an expert at rolling over and pulling hair. She’s only a month behind a typically developing child! Almost since birth, she has had Early Intervention specialists working with her on a weekly basis (sponsored by the State Health Department). They do exercises with her on a floor mat, and my mom is now an expert at this herself. In fact, Maggie’s floor routine has been my kids’ delight these past two weeks as they make faces at her, wave around her toys, and applaud every time she sits by herself. My two-year-old son is in love – Maggie is his new favorite person and every morning he begs to go to Mamie’s house to see her.
So I’m not quite sure why I have been so afraid. What I fear now is the pre-natal testing offered to expectant mothers so that they are “prepared” to deal with genetic abnormalities like Down Syndrome. I think back to my sister’s own lack of awareness of Maggie’s condition during her pregnancy – what would have happened had this been discovered in-utero? They can’t change her to make her a “normal” child (nor would my sister want that having fallen in love with Maggie just as she is). And given their belief that life begins at conception, she and her husband would certainly not have aborted their child.
What it would have most certainly done is stir up a fear and anxiety about my sister’s own future and the future of her family. And, unlike in the delivery room when she first found out about Maggie’s condition, there would be no precious newborn face to calm her fears. There would be no little coos to quell her anxieties. There would be no soft, sweet infant touch to tell her that everything was going to be okay.
There would be just this news of some abstract child with an abstract, uncertain, and scary condition. Not to mention that, just as there was no indication to my sister’s doctors that anything was wrong with Maggie, there are countless cases of false diagnoses telling parents that their perfectly healthy child has some kind of issue, disorder, or abnormality.
At my last OB visit, I was offered pre-natal testing – a new test that is a simple non-invasive blood test. After initially refusing it, I brought the brochure home to discuss it with my husband. The positive point it offered was that, if we discovered our child did have some type of genetic abnormality, we could be prepared. Personally, I’m not sure you can actually be prepared. Nothing can prepare you for the challenges you will face, but more importantly, nothing can prepare you for the joy your child will bring regardless of their “normalcy.”
Of course, as with any pregnant mom, I still fear any unexpected outcomes in the delivery room just as I fear the unexpected that is to come in their toddler and teen years. But Maggie has given me a new perspective on the basic value of each human being and particularly on the beauty and purpose of other children with genetic abnormalities. Mostly, she’s taught me that she’s not abnormal at all, and she’s not to be feared. She’s to be smiled at, played with, and loved, and she gives back to us more than we could ever give to her.
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