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

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.