Why I Said No To Prenatal Testing

Why I Said No To Prenatal Testing

I read a story today about a woman whose child’s photo was used in an offensive corporate campaign. Christie’s beautiful daughter has Down’s syndrome, and she had a gorgeous photo of her on her blog. A cheapo Turkish stock photo site lifted the picture illegally, from where it was then used by a large Spanish company selling prenatal testing kits. “Tranquility,” the poster promises to those who buy their wares, as if a little girl with Down’s syndrome were a cautionary tale. (Read the article, and let it rouse your angry mama bear, too.)

It took me back to the sterile room I sat in nearly four years ago, clutching at the gaping edges of the medical gown draped across my growing belly. My final pregnancy was different to the first two: I was officially a “geriatric pregnancy”, or AMA (of Advanced Maternal Age), as they politely noted in my file. In other words, I would be 35 by the time of delivery. Out came the kid gloves and the red carpet treatment: we elderly mamas are delicate, you know.

I listened carefully to what the doctor said, trying to stifle my inner snort as I wondered what kind of treatment Sarah, a first time mom at age 80, would have received. What was different, the doctor explained, was that because of the increased risk of complications  due to my advanced maternal age, I was eligible for a whole battery of prenatal tests. Insurance would pay for it all: elaborately subsidized peace of mind was mine for the taking.

“No, thank you,” I said.

The doctor held my gaze. “You do know the risks are significantly higher for a woman of your age?” she queried.

“Yes, I do,” I confirmed.

“And having the tests could give you early information so you could be fully prepared,” she followed up, pushing now.

“Yes,” I snapped, “but no matter what you tell me from those tests, I will keep this baby. And if there is something of concern, the 20 week ultrasound usually picks those markers up, don’t they? So I don’t see the point of undergoing extra tests, which could even be invasive and increase the risks for my baby, when I’m going to keep it anyway.”

She stepped back. I could see the words on her face: Oh, you’re one of THOSE.

Yes, I’m one of those. One of those who feels that prenatal testing gives parents a choice they shouldn’t have to make: of whether to kill the life inside them, or “live and let live.” One of those who has read about the heightened rates of false positives on those early tests – meaning they sometimes flag problems when in fact there are none. For some, this means invasive extra testing, for others this means an early choice to terminate the pregnancy: for everyone, this means significant stress and heartache.

I’m one of those who believes in modern medicine and vaccinates my kids on schedule. I take my physician’s advice on a great many things. When we have questions, we call the advice nurse. But when it comes to prenatal testing, I draw a line.

If I’m committed to keeping the baby, honestly, I just don’t see the point. And Genoma, with its horrible and offensive ad campaign, promising that its test can keep you “tranquil” so you don’t land up with a baby with Down’s syndrome, don’t deserve a dime of that lavish health-insurance-approved spending.

I know what the word above that darling girl’s face should have read: JOY. And the more special needs kids I meet, the more I know this is true. Heaven forbid we rob the world of beauties such as these.

 

Photo credit: Carol Lara (Flickr Creative Commons)/edited by Bronwyn Lea

 

 

19 thoughts on “Why I Said No To Prenatal Testing

  1. I too remember sitting in my doctor’s office but had a very different response from him. He said: I have to tell you about all these tests…blah,blah… when he finished I just looked at him, he looked at me, smiled and said “Kathy, I know you and I know you would never ‘act on’ any tests results so…let’s just not bother hey?” Thank you! Funny, he went on to share that even his wife who was over 40 didn’t bother with the tests! Like you Bronwyn, I’m all for good medical treatment but we can just go too far.

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  3. I am “ONE OF THOSE UNFORTUNATE BABIES”. i was born a Cerebral Palsy through the incompatibility of my parents blood. Fortunately for me, there were no test in those days.. My mom was 42 when she had me. Yes, life has not been easy for me, but I wouldn’t change it. God is using me, despite my speech impediment and 25% hearing. I am the author of an autobiography THE REAL ME and i am an inspirational speaker. I am married to a wonderful man and between us have 4 successful children, 3 of who are accountants and 1 is in H/R.We are also the proud grandparents of 6 grandchildren.
    My message is: no matter, what life throw at you, you can conquer it with God at your side. And God can and will make something beautiful of your life, if you turn to Him.

    • So glad you are here, June! Thank you speaking up. One of the most influential people for me in understanding this was the president of the law students council when I was at law school. He has cerebral palsy, and whenever people discussed “viability” in abortion debates, he would quietly remark: “you’re talking about me, remember?”

  4. We didn’t do any prenatal testing, either. But I can see someone requesting testing if the 20 week ultrasound picked up markers of something being atypical. If that had been me and the ultrasound picked up something, I might consider prenatal testing so I could be emotionally prepared for whatever might happen after birth, not so I could choose whether or not to abort. My “tranquility” would be knowing that God is in control, that He formed my child and loves him/her and me, and that He’ll be my strength no matter what happens. I’d want to know, for example, if my child had Down’s Syndrome so I could read up on it, talk to those who had experience with Down’s children/adults, prepare financially for long-term care (in the event of my eventual passing), and get to know other Down’s children/adults. I could do all that after the birth, of course, but I might not have as much time (or energy and mental stability) then, and I know that with my mental health issues, I’m better off prepared than having a curve ball thrown at me. (Which could still happen, but I like to minimize the possibility of surprises.) But what I wouldn’t do is abort. My child is a valuable person and I’d be clawing the throat of any doctor who dared tell me otherwise.

    But your point is well-taken. A lot of people would feel the need to decide between continuing the pregnancy and abortion. And that ad for “tranquility” is horrible! I know lots of people with significant physical/mental issues, and they are still valuable people. My daughter’s band class went on a field trip to a home for adults with mental disabilities, and the folks there are delightful. Her classmate’s great-aunt lived there prior to her death, and we heard some hilarious stories of her antics and her mischievous spirit. (Like the time she went to the grocery store and decided, at age 60, to ride in the cart while her friend pushed her around the store.) She was obviously missed by the other people and staff. Her life was meaningful, though the people at Genoma wouldn’t agree.

    Have you ever read “Jewel” by Bret Lott? It’s about a woman and her daughter with Down’s Syndrome in the post-World War II era and the following decades. Good stuff.

    • Your friends great aunt sounds SO delightful!! I think of our 20 week ultrasound had picked up markers for abnormalities, we probably would have had more tests too (forewarned is forearmed, they say), but I didn’t see the need to do it in the first trimester.

      • Oh, and the other things I wanted to say… I haven’t yet read Jewel, but it went on to my “Want to Read” list after I heard Bret Lott interviewed about it at the Festival of Faith and Writing last year. What an awesome guy!

      • The great aunt was a hoot, according to a staff member. She got in the buggy (as we call shopping carts in the South), rode around for a while, then tried to get out by herself. Oops! She managed to break a bone, but then again, most 60-somethings don’t get into a buggy, much less get out of one, so how could she have known better?!

  5. I would also never consider any option except keeping my baby, however I choose to do prenatal testing so that we and our medical team can be best prepared to take care of any baby. A pro-life friend who has a child with Down Syndrome has really opened my eyes on this. Many syndromes, such as DS, can have physical components-cardiac abnormalities, respiratory or gi problems-and I would want the nicu team and specialists ready and waiting to be looking for those things so they can be caught and treated quickly and effectively. Many people would prefer to be emotionally prepared for an unexpected outcome also, and I don’t think that is wrong at all.

    • That’s a really good point. Thank you for adding this. My intention wasn’t to say others shouldn’t have prenatal testing (although I am now a bit more leery of supporting the prenatal testing businesses given some of their advertising practices!) I appreciate your comment!

  6. I’d have to agree with Daisy here. It’s a totally legitimate choice to forego prenatal testing, but it’s an equally legitimate choice to undergo the testing! I’ve chosen not to do prenatal testing in my three pregnancies, but know others who also had no intention of terminating the pregnancy either, but wanted to be more prepared if they found out about a disability before the baby was born. Is it possible your doctor took a step back not because you were “one of THOSE”, but because you snapped at her? It’s her job to make sure you know the risk and can make an informed decision for yourself.

    • Yes, I suppose it’s possible that I was snappish… but my memory of the situation at the time was that she seemed incredulous that I wouldn’t do it, and asked me multiple times “if I was sure”, and “did I understand”, as if any sane person who really did understand would agree… (She wasn’t my regular physician, but a doc known for her “clinical” rather than warm demeanor). If I was snappish and offended her, I’m sorry.

  7. Oh, yes! I was 35 during my first pregnancy and we had been moving from Florida, to Ontario, to Arkansas, the latter of which locale was not offering “modern medicine” although my very young doctor liked to think so. (We were the first successful Lamaze Method couple to deliver in his hospital. One of a handful to return to breastfeeding. Had to trouble-shoot for errors in their laboratory work on two occasions so that I was 5 months pregnant with our next child before I had a positive pregnancy test.) He accused me of having “avoided” going to a doctor sooner because I did not want to “face” the issues of my “advanced years” in this pregnancy. I tried to explain to him that I had seen a doctor in Florida as soon as I conceived and that he was my next earliest opportunity for medical care (at 5 months). He argued for abortion. We sparred for 10 minutes and I finally gave up the intellectual battle and told him I was a Roman Catholic, whereupon he simply said, “Oh,” and changed the subject. Which was just as infuriating, but I no longer respected his thinking ability so what was the point? Of my following four pregnancies I lost one baby at 3 fetal months, no doubt because of a chiropractic adjustment which no one realized could, during the first trimester, be a threat to the baby. Heartbreaking. But all other pregnancies were normal and I delivered our last child when I was 43. I think the attitude you represent, Bronwyn, is the necessary prerequisite for accepting all that God has to give you and do through you for each child you bring into the world. Each individual is different along a wide range of possibilities. Being open to God about anything and everything about that child is like writing the blank check of your life to Jesus. You keep all the options open for Him to work at all times as a matter of principle. In our family, that has been exceptionally challenging but enormously rewarding work.

    • Oh Laurna: they were still wanting to do a pregnancy test at FIVE MONTHS? Surely the kicking in your extended belly would have been proof positive? I would have grave misgivings about that practitioner, too.

      I love the description of offering our life as writing a blank check to Jesus. Yes, yes, and yes. Always a worthwhile investment, no matter what it “costs”.

  8. Grrrr. Yes, I had my fourth boy the year I turned 40, and I heard all the stuff about risks and precautions, and I tried to — calmly — explain to them that I didn’t need the tests. How can one explain that, yes, we know the possible outcomes, and, yes, we receive them all as a gift from God’s good hand?

    • I suppose by continuing to do just that: explain it. If anything is an opportunity to show that we trust in our good God, pregnancy is one of those!

  9. I came across this post which was linked to in your recent Planned Parenthood/20 weeks ultrasound piece. I believe Diana of Diana Wrote shared it on Facebook! Anyway, when I saw this blog post I felt so much more validation. I actually had prenatal testing done in the first trimester on accident. My doctor said something about blood work and checking for anemia, and somehow the quad screen got lumped in there, too. I received a call a few months ago (actually, my husband did, because they couldn’t reach me and contacted my emergency contact) two days after my blood work saying I had a positive screening for Down Syndrome—in fact, it was 1:55. They consider a positive screening as much as 1:300 or so, so the “high number” really concerned me (even though 1:55 is still a 2% chance of having an affected pregnancy.) Of course I wasn’t expecting any screening news, nor results at this point. I was stunned, upset, and felt so confused. My doctor never talked to *me* but spoke to my husband who she was able to reach on the phone, and recommended I take a test the next day that was “99.9% accurate”, called Materniti 21, or M-21. I scheduled an appointment immediately but after a few hours started to have reservations. I had no idea what this test was, and plus it cost roughly $250. I came across a website about Down syndrome prenatal testing, and it actually linked to the exact story you referenced in your post, regarding “tranquility” of knowing you’re not having a child with Down Syndrome.

    The website also referenced how these new cell-free DNA prenatal testing companies have possibly led to more abortions, specifically in Down Syndrome pregnancies. I later found out a few weeks ago that research from Stem Express (of the infamous Planned Parenthood videos) contributes to “technology” that companies like Genoma, Harmony, and Materniti 21 use. The connections these companies have to sick places that use fetal tissue research was enough to make me decide I want to have nothing to do with any further prenatal testing.

    I had my 20-week ultrasound and also a 28-week ultrasound to screen for heart defects (in case I needed to be at a bigger hospital with a NICU after deliver, as Down Syndrome babies can sometimes have heart issues) and nothing showed up that was cause for alarm. Our sweet girl showed no markers for DS either, but I am happy whether she has DS or not. This season of not knowing has done so much for me spiritually. I know that others think I’m crazy for not pursuing amnio or the non-invasive cell free DNA testing through Materniti 21 that is “99.9% accurate” but I simply felt like God was saying, “No, just fully trust me.”

    We’ll find out in 3 or less months when she’s born. Sometimes being patient is extremely difficult, but the peace that has been given to me during this time,and spiritual sanctification received (by His grace), I wouldn’t trade at all, for testing that could grant only a “yes” or “no” answer. I feel like for me, God wanted me to use this time to cling to him more, and not to the knowledge of man…I know other parents make other decisions on prenatal testing to be better prepared, and that is totally fine. But I do hope more parents will consider the option of not pursuing further testing, and seeing if that’s something God could use to help them grow. It may not be something God wants to use in their life to bring about patience or trust (maybe it will be something else he uses!), but it’s something he’s done for me, and I see the beauty in waiting. We’ll find out in 3 months but I’m learning to sing His praises in the meantime!

    • Oops, just realized I came across this post from the Redbud Writer’s Guild Facebook page…not from Diana Wrote! 🙂

    • Emily! Thank you SO much for sharing your story here: a real expose of what is happening behind the scenes in the world of prenatal testing, and a powerful testimony to the peace that passes all understanding. What a journey God has led you on in these past few months. I would really love to hear how things go with you in the months ahead. For what its worth, have you read any of Micha Boyett’s blog? She went through prenatal testing last year and did give birth to a boy with Downs Syndrome (his name is Ace. He’s awesome.) I have learned SO MUCH from reading her story of trusting in God’s goodness through the waiting and then the knowing. You can easily find her by googling: she’s marvelous and no matter how things turn out, her words will encourage you – I’m sure of it. All the best as your family prepare to meet your new little one!

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