On October 12 the CBC National aired a story about Non-Invasive Prenatal Testing, headline “Paying for peace of mind”. The story starts at minute 12, but unfortunately the video recording is not available any more. I am not qualified to go into details about this test and medical advantages or disadvantages. According to my information though the reporters explained it wrong how the test actually works. Moreover, they failed to mention that the test is recommended only for women at increased risk which typically includes older age. The women in the story might have qualified for this category – she was 37 – but I doubt that everyone got that important part. Let’s ignore all of that for now and focus on the signal that the story sent. I am obviously looking at this from a perspective of a father whose children have both died.
We (read as media, society, medical professionals) have trained parents to be concerned about three things when starting a family:
- The first trimester
- Chromosomal abnormalities
- Sudden Infant Death Syndrome (SIDS)
Everything else gets neglected, despite statistics showing a different picture. In the CBC story a mother called Karen is interviewed and the way the story is pitched makes it sound as if she implicitly speaks out for the test to be paid for by public health insurance so that she can have peace of mind. It suggests that the only concern in a pregnancy is the question if a child might have a trisomy. And I in no way intend to say that trisomy is not a concern. However, it is not the only concern during pregnancy, delivery and the first few weeks of life.
Quote from Karen: “It is stressful enough being pregnant in the early stages and I just knew that I just didn’t have to worry about anything else any more.”. Reporter Kath Ruthy concludes “Worth the cost they believe to ensure peace of mind during Karen’s final months of pregnancy.” These are the lines that I find upsetting. I really have to wonder if such news reports are simply the result of a big lobby of pharmaceutical companies who have a very vested interest in getting this test approved and have every single expectant mother undergo this procedure. This is likely a multi-million dollar deal for such companies. As if a test like this one can ensure everything will go fine if the results don’t show a chromosomal abnormality. It is after all still only a screening test and not a diagnostic test and it might take several more years of research before this might change. During this time a positive result will still require a diagnostic test to be performed that carries risks, not to mention all the other possible complications that receive no attention at all.
I tried to find some facts. Is it more likely to have a child with a trisomy or to have a stillbirth? This might sound provocative, but the intention is not to compare one as better or worse than the other. I simply want to raise the question of how parents are informed about what type of things might happen during a pregnancy and how public funds are spent to make it safer for parents. At the end of the day there are many things that can happen during pregnancy, delivery or neo-natal. Again, my intention is not to cause panic for parents. I just don’t agree with an approach to create a false sense of security for parents. In my opinion this is one of the reasons why shock and grief hit bereaved parents even harder because one is kicked from a perceived safety into total desaster.
- The risk of down syndrome significantly increases with maternal age. Although this is true for stillbirth as well, it is not that drastic.
- 9.93 out of 1000 total births (live birth and stillbirth) are stillbirths, i.e. the baby dies.
- According to the Lower Mainland Down Syndrome Society approx. 1 in 797 live births in BC is a child with Down Syndrome. This is averaged over all ages. If one compares the rates by maternal age, e.g. Perinatal Services BC statistics, it shows the dramatic increase with the age of the mother. Both sources fail to answer the important question of probability of trisomy in all pregnancies as they only look at rates in relation to live births. Why is that the case? If we just look at live births, it would only cover cases where parents knew about the birth defect and decided not to terminate, errors during screening or parents who did not get screened and found out only at birth. But what is the actual probability of having a child with a trisomy?
- I am unable to find a statistic that shows the rate of Down Syndrome out of total pregnancies. Based on articles the typical outcome of a positive diagnostic test seems to be abortion, e.g. this one states that 81% of the study population selected abortion.
I guess without searching for more conclusive data, I am unable to really say what the likelihood of down syndrome or trisomy is compared to the likelihood of stillbirth. I just feels wrong to me that every parent is counseled with regard to Down Syndrome and testing, but nothing is done about stillbirth. Doctors hardly mention it, likely because they cannot do anything about it. However, the right thing to do would be to acknowledge that it is an issue and to start looking for answers. For that we require awareness and research funding and unfortunately stories like this one by the CBC are not helpful to achieve that.