In Pregnancy, Knowledge is Power

When I was pregnant, I read and heard a lot about prenatal testing.  Many women around me said that they had declined it.  They would love their babies no matter what, so what was the use in having any testing done?

First, a disclaimer, I am not a medical professional.  But I am here to advocate for prenatal testing.  I know from experience that prenatal testing can save lives.  It can lead to a healthier baby and a better pregnancy outcome.  In pregnancy, as in everything else, knowledge is power.

When I found out I was pregnant, I went to visit my family doctor.  He said a few things to me.  One was that I shouldn’t announce my pregnancy, because I could miscarry.  He really said this.  The second was that I could opt to do some prenatal testing.  The prenatal testing, he explained very quickly, tested for Down Syndrome.  My (former) family doctor said that I should only go ahead with this testing if I were willing to abort a fetus who tested positive for Down Syndrome.  He also really said this.

Thank goodness I ignored this advice.  Why?  Because what he didn’t tell me was that the standard prenatal blood testing (done – in Canada – before 15 weeks) can also screen for neural tube defects and for placental problems.

At twelve weeks, Pete and I announced that we were expecting.  At fifteen weeks, when my prenatal blood test results came back, we had to tell our loved ones that we had bad news.  Our baby had a 1 in 5 chance of having Down Syndrome and an elevated chance of having a neural tube defect.

We were referred by our midwives to Mount Sinai Hospital in Toronto, one of the best hospitals in the world for maternal-fetal medicine.  There, I underwent genetic counselling and later, an amniocentesis.

We eventually found out that our baby did not have Down Syndrome, and neither did she (because they accidentally told us she had two X chromosomes – there goes that surprise!) have a neural tube defect.  At that point, we thought we were in the clear.  The blood test was wrong!  It was all a big misunderstanding.

What we found out, however, is that often, a false-positive screen for Down Syndrome or a neural tube defect does not mean that nothing is wrong.  It often means that something is wrong with the placenta.  In my case, my placenta was too small.

There was nothing that I did wrong.  There was nothing I could have done differently.  It was either genetics or simple bad luck (we still don’t know, and probably never will).  In about 2-3 percent of pregnancies, something goes wrong with the placenta.

Placental problems are serious business.  They are often life threatening to both mother and fetus.

I’m writing this post because I’m hoping to spread some awareness.  Our placenta specialist (there is such a thing!) told us that many midwives, family doctors and even obstetricians are not aware that prenatal blood testing can provide important information about the health of the placenta.  He said that this was partially the fault of placenta researchers (himself included).  They simply weren’t great at getting the word out.

Please, if you’re pregnant, have prenatal testing done.  If you do have a placental problem, there is a lot you can do to minimize the risk to yourself and to your baby.  Monitoring babies who are not growing properly due to a placental issue can save their lives.  Monitoring your own health (because placental insufficiency is linked to pre-eclampsia and HELLP syndrome) can save your life.

Little C had intrauterine growth restriction (IUGR) due to my placental insufficiency.  She was monitored by ultrasound every two weeks and when she stopped growing, and was in danger of suffering brain damage, I was induced.  She was born at 37 weeks and a teeny-tiny 4 lbs 6 oz.  But she was delivered early enough that she didn’t suffer any long-term difficulties.

C in the nursery with her feeding tube

C in the nursery with her feeding tube

We were lucky.  We got the best possible outcome.  Not all babies whose mothers have placental insufficiency do so well.  C spent 2 weeks in the NICU and is now a busy little toddler.  Even though I spent my pregnancy worried sick about her, I’m so thankful that I followed through with prenatal testing.

Remember, in pregnancy, knowledge is power.

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26 thoughts on “In Pregnancy, Knowledge is Power

  1. I am so glad you wrote this! It is important for people to realize how significant this testing is! My twins suffered from a disease of the placenta as well, and I have two close friends who had placental abruptions – thankfully they both survived, but one of the babies did not. I am glad you are spreading awareness!

    • Thank you for inspiring me to write it! Your story was the driving force behind this post. I’m so sorry to hear about your friends and placental abruption. How awful.
      I really do hope I can do my part in getting the word out. Thanks again!

  2. What an adorable little sweetheart you have! I’m so glad that everything turned out fine. Thank goodness you decided to go ahead with the testing!

    I couldn’t agree with you more. I really dislike when people use the “we will love the baby no matter what” excuse. I opted for the testing and I also planned to love my baby no matter what. I was going to use all the tools that were presented to me in order to have the most informed pregnancy that I could.

    In the end it was a good thing I checked too! I was never given a ratio and my blood work came back fine, but B’s nuchal fold was on the higher end of average. Because of this, they wanted to set me up for a fetal echo to check for congenital heart issues. While they found that B had no issues at that scan, it was discovered that I had a smaller, accessory lobe to my placenta. Fortunately the umbilical cord attached to the larger lobe and neither were blocking the way out, so there wouldn’t be any problems with it, but it was still helpful to know that it was there in the first place so they could make sure to get it all during delivery.

    This is such a great post!

    • That’s an amazing story. There are so many things to keep an eye out for during pregnancy and I agree with you, it’s a good idea to use all the tools at your disposal. I know that people like to say that pregnancy is natural and women have been doing it for millennia, but there are still myriad ways it can become complicated, and it’s a good idea to be as informed as you can be, for your own sake and for your baby’s. Thanks for sharing your story.

  3. I was the opposite and opted not to have the testing and instead had high level ultrasounds. I’m not sure why, perhaps because I was so young and we just weren’t worried. If I were to get pregnant again, although I have no plans to be, I would have all the testing done. I”m 10 years older and the risks are higher.

    • Also, if you were young, your doctor probably didn’t press you to do any testing. Mine certainly didn’t, even though I was over 30. I’m glad everything went well for you and thank you so much for commenting.

  4. Thanks for this post! Even though the Husband and I agree that we wouldn’t abort for a genetic defect, we still believe in getting the testing done. I didn’t know how it could help diagnose placental defects. Definitely going to spread the word on that!

    • Very few people know that the testing done for Down Syndrome can detect placental defects. I only know because that’s what happened to us. Otherwise I would have no idea either. We did the testing for the same reason you did, because it’s good to know in advance. If necessary, you can have a support system in place before delivery day.
      Thank you very much for spreading the word. It’s so important.

  5. I didn’t know the test covered placenta health, too. One of my twins had a congenital heart defect and I refused the test for downs because I felt like they were jinxed — hitting all the low odds already with being momo/identical twins and only one having a heart defect.
    My younger twin was also 4lbs 6 oz.
    I love the picture of your daughter – ng tube and all 😉
    Happy to hear she’s doing well.
    -Nanette

  6. I can definitely understand feeling jinxed. And probably if one of your twins had a congenital heart defect you would have been monitored closely anyway, so you wouldn’t have to worry about a slow-growing fetus going unnoticed. How are they doing today? We have a genetic heart condition in our family but we’re not sure if Little C has inherited it or not.
    Thank you so much for commenting.

  7. {Melinda} I do think this information is really important to have because it can save babies’ lives. My son was born with cystic fibrosis, but wasn’t diagnosed until he was 7 months old because there was no testing for it at birth. Now, most states test for CF after delivery. So I think post-delivery testing is important, too. Had we known Micah’s diagnosis when he was born, we could have started treating his disease earlier. Poor boy had to go through so much before we knew what was wrong.

    Hope your sweet little one is thriving now! 🙂 She’s adorable.

  8. How awful for you and Micah. How is he doing now? Did you know that you were CF carriers?
    C is doing great today, thinks for asking. She caught up weight-wise very quickly (by about four months) and her height is just about caught up now. She’s a champion eater!

    • Thank you for saying so. I hesitated to write this post, because it was such a difficult time for us and it’s still painful to think about, but I was hoping that I could spread some awareness and maybe help someone else out. Thanks again.

  9. Visiting from SITS. You are right, knowledge is power. Just know that false positives are there…and there are other reasons to decline the test. If you know you are pregnant with multiples, the tests are pretty much useless…but you have other things, like ultrasounds. Just a thought, from a mom who declined the test the second time for that reason!

    • That can be true about false-positives, but in this case, the false-positive for Down Syndrome was an indication of a placental problem. False-positives can provide a lot of information about the health of the pregnancy, even if it has been incorrect in raising a red flag for a particular genetic defect.

  10. Very interesting. When we had our daughter (4 yrs ago), we were told the same thing you were (if we weren’t going to abort, no reason to have the tests). Our doctor also told us that regardless of the results, it wouldn’t affect my care during pregnancy, or anything during labor & delivery. So naturally, we opted out.

    • And probably your doctor thought that was true. My placenta specialist said that very few doctors know that false positive Down Syndrome screens often indicate a problem with the placenta. I’m hoping word gets out, because not knowing about a fetus with IUGR can lead to huge problems. Thanks for visiting!

  11. Absolutely! We also had an increased DS risk and a number of people asked why we’d even bother testing if we weren’t going to terminate (not that we were discussing that with people one way or another). I said outright that prenatal testing can catch lots of perfectly fixable things and, furthermore, if there was going to be a medical situation at birth, I’d want to know about it in advance! Who would want a surprise like that? Silly doctors…

  12. Pingback: A Parent’s Guide to the NICU | Bike, Banjo & Baby

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