In 2014 Richard Dawkins’ tweet ‘abort it and try again’, on babies with Down syndrome, spurred a storm of protests around the globe. This year when a National Dutch newspaper featured a couple who did just that, the silence was deafening.
Many people view screening and selection as a personal choice, but decisions that governments make affect how societies deal with differences (in culture, race, colour, religion, ability, etc.). The Netherlands offers screening to enable selection for Down syndrome as part of its’ public healthcare system. The Netherlands is the first country to offer the Nipt (Non invasive prenatal test) primarily aimed at Down syndrome as a pilot program under the national screening program. The UK and other countries are considering introducing the Nipt.
Austria, however, strictly avoids a national screening program for Down syndrome and other aneuploidies “because doctors and the national health service are NOT interested in terminating as many handicapped individuals as possible1)”.
Abortion because your baby has Down
‘Love goes beyond giving life’
Every year hundreds of couples decide to terminate their pregnancy after the child is diagnosed with Down syndrome. So did Daniëlle Manders and Tjerk Eelkma. They talk about the most difficult decision in their lifetime.
From the moment Daniëlle Manders (41) was pregnant with her second child, she felt something wasn’t right. Her intuition was correct; the baby in her womb had Down syndrome. With her husband Tjerk Eelkema (54) they had to decide: will we have this baby or terminate pregnancy?
Daniëlle: “In the morning we were in the obstetricians’ office. The result from the amniotic test would follow later that day. The obstetrician said we had nothing to worry about. But I did. Immediately after Sterre was conceived I had developed erysipelas on my leg, without a cause. I said to Tjerk: ‘I don’t know. I am not convinced this is good’. During my 20 week ultrasound this feeling grew stronger. Our baby turned out to have a very small head.”
Tjerk: “In the beginning of our pregnancy, when we didn’t know anything, we saw people with Down syndrome literally everywhere. During a long walk in the Swiss Alps we talked about it. ‘You would not survive having to choose between life and death,’ we said to each other. It was more on our mind than during the pregnancy of our first daughter Floor.”
Daniëlle: “After visiting the obstetrician I thought: ‘What if my life looks totally different at the end of this day?’ Soon after that the gynecologist phoned. Our baby had Down syndrome.”
Tjerk: “It was immediately clear to us that we wanted to give birth to a healthy baby.”
Daniëlle: “What people forget is that a child with Down syndrome needs lifelong care. But who cares for her after something happens to us? Our children? No. It is our child and our responsibility.”
Tjerk: “And what I found important was: what does it mean to Floor? And to Vera and Karsten, the children from my previous marriage? You want to split the attention fifty-fifty among all your children. But with a child with Down syndrome you should be glad if that distribution is eighty-twenty. Is that fair? I don’t think so. In itself this was enough reason for me not to continue the pregnancy.”
Daniëlle: “If you become pregnant, you want to protect the child inside you against the bad outside world. But when you hear something is wrong, you have to make a decision.”
Tjerk: “And then you realize you have become that bad outside world yourself.”
Daniëlle: “There was a great need to justify our decision. That is why I told that our daughter was not viable with life. She was. That is what shame does to you. Fortunately my parents were very supportive. There were also very harsh judgments about our decision to terminate Sterre’s pregnancy. It even cost us friendships.”
Tjerk: “Some get it, some do not.”
Daniëlle: “5 Days after that phone call I had to deliver. That was horrible. My body wasn’t making alleviating endorphins but adrenaline, which is why pain medication didn’t work. I was given an epidural. 2 Minutes later our daughter was stillborn. After the death of Sterre I had to mourn. But how do you do that? I felt empty. Tjerk and I could not find each other. Which is why we looked at a coach for help. The coach told us we had to ‘go to each others’ island’. Without carrying luggage from the past. Do you dare? Can you see and hear what goes on in the other person? We learned to understand that we are both in different places in this process, but sometimes we have similarities too.”
Daniëlle: “After Sterre was born we knew we wanted to have another baby. ‘It’s allowed. Go for it,’ the gynecologist said.”
Tjerk: “We were scared. The gynecologist took away our fear. The chance of this happening again was slim.”
Daniëlle: “Conception of Christian took place on the date Sterres’ calculated date of birth. That feels like a great connection. Without her, he would have never been born. I am proud of my son, even though I did not immediately bonded with him. My heart still belonged to Sterre. There are people who think I did not love her. But love goes beyond giving life.”