Why I Won't Be Doing Prenatal Screening

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In Ontario (and most of the developed world), pregnant women are offered something called Prenatal Screening. The screening usually involves both blood work and ultrasound, and is done at around 11 weeks.

In my first pregnancy, prenatal screening wasn't really offered as a choice to me. I began my pregnancy under the care of my family doctor, as I was still on the waiting list to get a midwife. Midwives practice something called informed choice - you are given all the relevant information about specific tests/procedures, and then it's up to you to make the final decision.

Most doctors, however, do not practice informed choice, and instead tend to offer up tests/procedures as the "normal" thing to do. There's a whole body of evidence out there which shows that most clinicians are not successful at involving their patients in making health care decisions.

So when prenatal screening comes up in pregnancy, it's not so much a choice, as it is "the thing to do." And so I did!

If women understand the consequences of the screening, and have a good grasp on what they would do with the information, then there is no problem. But when women are unsure, or consent to procedures without really understanding what's going to happen, then it is a problem.

Screening tests for three things - Down Syndrome, Trisomy 18 and Open Neural Tube Defects. You will be told your chance of having a baby with these conditions (e.g. 1 in 250), and if your chance is higher than expected, you have a positive result. This does not necessarily mean your baby has one of these conditions, but it does mean you're offered further diagnostic testing (usually in the form of amniocentesis, which carries its own risks). If an accurate diagnosis is made through amnio, then you have three options:

1) Prepare yourself for life with a child who has disabilities, or a child who will die shortly after birth (depending on the severity of the condition)

2) Plan to give your child up for adoption if you feel you cannot handle caring for a child with disabilities

3) Abort your pregnancy

Clearly, none of these options are what any parent wants to go through. We all want to have a healthy child. But once you choose to undergo prenatal screening, you must be able to think ahead and imagine what you might do with the information you are given. If you get a positive result, will you go for amniocentesis (despite its small risk of miscarriage)? If you get a diagnosis, which option will you choose?

Testing for these conditions also raises a number of ethical issues, and potentially better screening tools soon to come on the market may have parents choosing to abort before they've had a glimpse of their baby via ultrasound or through movements felt - before any kind of bonding has occurred. Some experts suggest that the abortion rate for parents who discover their baby has Down Syndrome could be as high as 90%. Parents of children with Down Syndrome are concerned over this fact, as clearly, children with Down Syndrome are just as loved/special/amazing as children without the extra chromosome. As genetic testing becomes more advanced and available, you have to wonder where this will take us? How far is too far?

The 90% abortion rate definitely scares me. As a second time parent, I have firsthand experience loving a child. I bonded with my baby immediately upon discovering I was pregnant this time around. But as a first-time mom, I remember the baby in my belly being kind of abstract. Bonding didn't happen until later (and probably even later than it happens between most other mothers and babies). If the test had discovered one of the three conditions, would I have considered abortion and gone on to have major regrets? Part of me thinks "no," that I would have just prepared myself for life with a child with disabilities, but I wonder if other mothers out there have regretted the hasty decision.

So this time around, we have opted not to do prenatal screening. If I received the diagnosis during pregnancy, I don't think the information would be good for my well being. I'm a worrier, and my anxiety would probably rise to unmanageable levels. Plus, I'm a kinesthetic learner - I learn by doing and experiencing, not by reading books or observing other people's experiences. So life with a child with disabilities would be a shock, but I would need to learn as I went along.

Plus, as my midwife put it, "if you're a woman who believes in letting nature take its course, then prenatal screening is probably not the right choice for you." And that's exactly who I am - I believe that all things happen for a reason, and I would be willing to go down a difficult path if I needed to. Even one where I might have to say goodbye to my baby shortly after birth.

What is your experience with prenatal screening?