On The Other Side...of pre-natal testing.

Sometimes things are so clear until you find yourself on the other side. This translates into many areas of life. In fact, today alone, I have discussed the other side of parenting, the other side of parenting a child with a disability, the other side of homosexuality and the other side of prenatal testing. The first two I discuss quite a bit in this space but I never really venture into the last two and yet they pose ever lingering questions in my day-to-day life, and sometimes invite a few awkward elephants into the room. They are questions that deserve discussion and yet there never seems to be a right moment.

I admitted today, that perhaps my family is a little more British than we would like to think. We don’t talk about that stuff, the elephants in the room, because…well…it just doesn’t seem to come up. It doesn’t seem to be appropriate at the time and yet my husband finds it eerily annoying that we don’t discuss things as a family but rather just let the elephants come to tea and instead, talk about church, hockey or bodily functions.

But he is right, there are things to talk about, discussions to be had and elephants to be shooed because goodness knows the room is getting a little crowded.

So. Prenatal testing. Let’s talk about it…actually, in this case, I am going to let my friend Patti talk about it because she knows. She’s been there.

She writes,

“I would like you to take a look at these statistics,” said my obstetrician, sliding a sheet of paper across the table to me with a concerned smile on her face.

I glanced down at the numbers, noted the words Down syndrome, and slid the paper back across the table.

“I’m aware of my elevated risks for chromosomal issues,” I smiled back, “but we’re fine with whoever God gives us.”

This conversation took place eight years ago; I was 36 years old and pregnant with our eighth child. I declined all prenatal testing, which at that time included a quad marker screening and an amniocentesis, just as I had done with all my previous pregnancies.

Fast forward to last month, where at age 44 I am 20 weeks pregnant with our eleventh child…”

She continues,

I knew the moment they held up my little girl that she had Down syndrome; the features of her tiny face, combined with her shortened limbs left no doubt in my mind. I didn’t experience grief or despair in those moments; I was filled with an overwhelming urge to protect my baby from what anyone might think. I was in love – completely head-over-heels in love, and no amount of information could have prepared me for that.

However . . . my older children shared a different experience. My daughter Mackenzie delivered Lily while our doctor stood beside her . . . Kenzie said from the moment she helped pull her tiny body from me, she knew Lily had Down syndrome. She smiled and laughed with the rest of us, but when Lily began to turn blue and required oxygen, Kenzie sensed something else was wrong. She turned to me, grief and fear etched on her beautiful young face.

I encourage you to read the whole post, which can be found here.
Sometimes, things are different on the other side. I wanted to share Patti’s story because it is honest. Not because you have to do what she did, or that I would do the same. In fact, truth be told, as it stands in this moment, if I were to have another child, I would again, decline testing. It’s not because I am a superwoman and I am “stronger” (a phrase which send chills up my spine every time I hear it in reference to me or in reference as to why someone could not possibly have a child with a disability) but because I deal better with things as they come. I would not have chosen to know that Ella had Down Syndrome because I would have fretted for the duration of my pregnancy and, I dare to say that she would not be the child she is today. Because I think that there is a direct correlation between how relaxed I was during my pregnancy and her temperament as an infant. (yes, yes, those of you who know me can go ahead and have a chuckle…but relatively speaking…)

All this to say, while I believe that abortion is wrong I don’t think pre-natal testing is. Their marketing however, is incredibly mal-informed and misleading. Patti described her experience when faced with the choice, the doctor said to her:

“Oh no, it’s available at any point during pregnancy. It’s just marketed as available during the first trimester so that…” she stumbled over her words, smiled and looked at Lily, and attempted to finish the sentence.

“So that parents are given that information as soon as possible. Because if you wait to test until 20 weeks, then in some states you are up against…that cut-off point…”

“For termination,” I finished for her.

(This post can be found here)

Thousands of women are offered a “solution” for a “problem” they know nothing about. That is why organizations like the Canadian Down Syndrome Society are so important. They work to provide education to health care professionals and parents so that they can present and know the risks, the benefits and what a parent really needs to know about caring for a child with a Down Syndrome.

Recognize this sweet little face? It’s none other than our Ella Bella. Making a difference already.

Individuals with Down Syndrome are not things, they are not burdens, they are not RETARDED, (a word which was used by our Genetic specialist upon Ella’s diagnosis). They are human beings, they have names and personalities, they have abilities and they have something to contribute…if you let them.

Patti may have chosen pre-natal testing but it was not because she did not understand all of these things, it was so that she can be better prepared for her child’s birth. How about you? What do you think? I would love to know your thoughts. Would you have the testing? Why or why not?