The first time Sanne van der Hout (40) thinks about prenatal screening, she is still a 24-year-old student. For her master’s degree in applied ethics, she is writing a paper on research into chromosomal and structural congenital abnormalities during pregnancy. The central question is whether women will postpone their desire to have children now that prenatal screening offers the possibility of excluding certain disorders.
‘It was mainly a philosophical exercise,’ says Van der Hout, who is now an assistant professor of biomedical ethics at Maastricht University. ‘At that time I had absolutely no idea what was at stake in such a prenatal examination. I thought too easily about the offer of invasive diagnostics such as amniocentesis, and also about termination of pregnancy. I didn’t realize the extent to which these investigations and their consequences affect you emotionally. I didn’t have the personal experience I have now.’
Van der Hout is 29 when she is pregnant with her second child and takes a combination test at twelve weeks of pregnancy, the predecessor of the NIPT, which is now offered free of charge. A blood test is used to investigate whether there are indications of Down’s, Edwards’ or Patau’s syndrome (in the case of the latter two syndromes, the child dies during or shortly after pregnancy). Van der Hout is told that there is a 1 in 20 chance that her child has Down syndrome. Normally, at her age, that chance is around 1 in 1,000.
‘It overwhelmed me. I hadn’t thought at all about what to do if it turned out that I was pregnant with a child with Down syndrome. My partner and I had that conversation for the first time. We weren’t the same at first. My friend was more inclined to abort. I also didn’t want a baby with a chromosomal abnormality in advance, but it felt like I had no choice anymore, because the baby was already on its way.
‘The tricky thing about Down syndrome is that you don’t know in advance whether the child will have a good quality of life. You hear stories of children with Down who are so aggressive and restless that they have to be institutionalized. If that became the scenario for my child, I could stand behind the termination of the pregnancy. But you also have children who can go to a regular primary school with some extra support and go through life without too many problems.
‘In the end, my friend and I only decided the evening before the puncture that we would not draw any consequences from the result. Whatever the result, we had a cradle ready for Plukje, as I described our baby in my book (Unexpected. When prenatal screening leads to impossible choices, red.) have started to mention.’
2023-08-18 19:41:33
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