Prenatal Screening in Ontario: part 1

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As a mom-to-be aged 35 or over in Ontario, pre-natal screening was recommended by my midwife. Although you have the choice to opt-out no matter what your age, and I personally know moms who have, Jon and I decided we wanted peace of mind and the chance to be prepared – in case we needed preparation if something came our way.

This is a lengthy post, but hopefully it will help you understand and be aware of the screening process here in Ontario. I wasn’t fully educated at the time, and it actually led to a series of mistakes that I could have caught on to if I was educated.

Disclaimer: I am not a health professional nor providing health or medical advice to readers. All content on my blog are personal experiences and opinions.

What is pre-natal screening?

According to prenatalscreeningontario.ca, a website by the Ontario Ministry of Health and Long Term Care:

Prenatal screening provides a woman with her own risk of having a child with:

  1. Down syndrome (also called trisomy 21)
  2. Trisomy 18 and
  3. Open Spina Bifida (open neural tube defects).

The screening is done through various tests, and the standard tests are all funded by the government and covered under OHIP.

My prenatal screening experience

Integrated Prenatal Screening (IPS)

The test that I was “assigned” with was the IPS. It’s a 3-step procedure that takes place over a course of about 8-10 weeks, which then can lead to further testing depending on your results. My midwife gave me 3 requisitions (forms) at our first appointment that I would need to take with me to each of the tests: an ultrasound req, and 2 separate blood reqs.

Step 1: NT (Nuchal Translucency) Ultrasound

When: Between weeks 11-14

This ultrasound is to be done between weeks 11-14, followed by a blood test. I did this ultrasound on 12w+2d. Since my ultrasound lab and blood lab are in the same building, I did them one after another. If you’re in a similar situation, make sure you have enough time off work/in your schedule to do both; I would say about an hour between the two.

This ultrasound was fairly quick – no more than 10-15 minutes. The main thing is for the technician to take measurements of the baby’s nuchal translucency (NT), which is a fluid-filled space at the back of its neck. Jon was allowed to come in at the end for a few minutes to watch our little baby jostle around, which is always fun!

Regarding ultrasound preparedness: in the beginning of your pregnancy, they always tell you to have a full bladder before an ultrasound. They really do mean this. I had a bad tendency of not keeping a full bladder, and there were at least 3 different ultrasounds where I was either sent home or I had to gulp a shitload of water and sit around for half an hour because my bladder wasn’t full enough. It’s easier to have a too-full bladder (which also happened to me once) that you can empty a bit than one that’s not full enough. I wasted an afternoon off work because I couldn’t get one of my scheduled ultrasounds done.
Step 2: Blood test part 1

When: Between weeks 11-14

This was a simple blood test done at the blood lab. As I said, it’s also done between weeks 11-14, and I did mine right after my Step 1 NT ultrasound. I don’t even remember how many tubes they took, but it was over in a minute. No biggie!

Step 3: Blood test part 2

When: Between Weeks 15-20

This is a second blood test that’s to be done between weeks 15-20. Also really quick, in and out in a couple of minutes. I made a mistake in timing here, which I blame on one of my midwives, but also my lack of education on prenatal screening. Read on:

One of my midwives had written a date on my blood req, which was supposed to roughly be the date that I should go and do this test. I followed the date to the tee, without actually checking what week that day actually fell on. Turns out the midwife wrote the wrong date, and I went a week too early at 14w+0d (instead of waiting until at least 15w+0d). I didn’t realize it at the time, and learned later on that the blood test didn’t “qualify” as part of my IPS screening and was basically useless.

The results

When: Between Weeks 16-21

So after Step 3, your results should get to you between weeks 16-21 (depending on when you did your tests). By regular standards, it shouldn’t take more than a week or so after Step 3. I had asked my midwife at our week 16 appointment about the results, and was told that they didn’t receive anything yet. In fact, she said that if I didn’t hear anything in the next week or so, it meant that everything is fine. By week 18, I hadn’t heard anything so obviously Jon and I thought we were home free!

Sadly, at week 19, I got a call from one of the midwives who had some bad news. After my tests, they found that our baby had a 1 in 240 chance of Down syndrome. I’ll go into details on this in Part 2 of the Prenatal Screening post, but first I want to talk about how the midwives messed my testing up for me.

Administrative Errors

The reason why it took so long for me to get the Down syndrome screening results was because of the “Step 3 screw-up”, which started with one of the midwives writing the wrong date for me to go get the blood test done. That’s one big grrrr. Along with an additional administrative screw-up at the midwives’ clinic. Another grrrr. Since I did Step 3 a week too early, the lab didn’t qualify that blood sample as part of my IPS. By week 16-17, the lab called the midwife clinic and actually asked them where my Step 3 blood sample was. The midwives were supposed to call me and tell me about this, but for some reason it was missed and they never called.

You can imagine how peeved Jon and I were at the clinic. This was a lesson in being educated about your pregnancy and all these tests that your health care provider may send you to go do. Administrative and human errors happen, so if you know what to expect then you can be on top of things. When you’re educated, you can call your midwife or OB’s office and not seem like a paranoid patient. At the time, I just followed what I was told to do and not knowing specifics led to all these grrrrs.

IPS’ alternative, First Trimester Screening (FTS)

Luckily, missing Step 3 in my IPS screening was not the end of the world. It turns out that there is another type of prenatal screening that the province provides, called FTS.

Step 1 and Step 2 of FTS are identical to IPS, but with FTS there is no Step 3. This second blood test (the one that I missed out on) is the one thing that differentiates IPS from FTS. Thank goodness! When the midwives clinic royally messed up my testing, I wasn’t aware of this fact, so we were kind of freaking out. Luckily the tests I did were still enough to screen me for Down syndrome, Trisomy 18and Open Spina BifidaI was just getting the results way later than I should have.

FTS is better than IPS in the sense that you can get screening results much earlier (during weeks 12-15 instead of weeks 16-21), which in turn allows parents to make decisions on their pregnancy earlier, if needed.

My midwife mentioned that the province is trying to get health care providers to move toward FTS instead of IPS, though at this point I can only take her word for it as I haven’t read anything on the government’s website about it.

The third alternative: Serum Integrated Prenatal Screening (SIPS)

To be honest, I don’t know much about SIPS as it was never offered to me as a screening. I learned about it from visiting the prenatalscreeningontario.ca site. It seems very similar to IPS and FTS, except in this case we Step 1 missing (the NT ultrasound), but both blood tests are required.

Read more about SIPS here:  http://www.prenatalscreeningontario.ca/Default.aspx?cid=19&lang=1.

The fourth alternative: Non-Invasive Prenatal Testing (NIPT)

Oh my goodness! There is a fourth option for prenatal screening. This one is really new here in Ontario, and the big difference is that it’s generally NOT funded by OHIP (there are some exceptions). The really great thing is that it’s non-invasive and you can do it as early as Week 10. I do have more to say about NIPT in Part 2, so head on over there to read about this option, and also my experience with it.

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Prenatal screening in Ontario