What do you do when the NIPT – the Non-Invasive Prenatal Test – shows that your child may have a syndrome? Marlien (36) talks about it.
The NIPT
“’An abnormality has been found on trisomy 18, there is a chance that your child has Edwards syndrome’. The midwife announced it very calmly. “Possible?”, my friend René asked. “As in, so they’re not sure?” According to the midwife, more than 10% of the positive results had nothing to worry about. We could still opt for follow-up examinations, but had to go to the gynecologist anyway.
My friend and I were in shock. I was almost thirteen weeks pregnant, we hadn’t told anyone we were expecting yet. There is always a chance that you will have a child with something wrong. But there were no abnormalities in any of our families, and at the time I was thirty-four, I was not so old that my baby was at increased risk. Moreover, we already had a healthy daughter, Kirsten, one and a half years old – for whom we were only offered a twenty-week ultrasound scan at the time.
Desirable
René and I had talked about it before I got pregnant. What we would do if our child had Down syndrome, or something else. Every life is desirable, we decided. Unless the disability were so severe that our child would have no quality of life. Children with Patau’s or Edwards’ syndrome – the two other chromosome abnormalities detected with NIPT – often do not live longer than one year, if they are born alive, and have serious intellectual and/or physical disabilities. A child with Down syndrome, on the other hand, can often lead a happy life.
The outcome
I was terrified of chorionic villus sampling or amniocentesis. What if they induced a miscarriage? Head-in-the-sand policy, because if that test confirmed a serious abnormality, we probably wouldn’t even want to continue the pregnancy. It wasn’t until I was sixteen weeks that I dared to take the plunge. The amniocentesis result was rare but unrelenting: our child was 99% certain to have Edwards syndrome. We decided not to continue with the pregnancy. For the sake of our child, who would suffer, but also for the sake of our daughter. What would be the impact on her of having a brother or sister in need that she would also lose?
Birth
I was induced at just over eighteen weeks. It was a hellish birth; I could not emotionally cope with the fact that our baby would be born lifeless. There was a good chance that she had also died before or during childbirth, but that did not ease the pain. Lisanne was born lifeless after six hours, two years ago now. I don’t want to get pregnant anymore. We now know that we have a healthy child with Kirsten is miracle enough.”
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2023-12-09 15:01:01
#Marlien #terminated #pregnancy #NIPT #couldnt #child
