• crazybighope

Ending a Wanted Pregnancy Was The Hardest Decision Of My Life

My husband and I still find it hard to talk about our termination for medical reasons, partly because of the deep conflict it created between us. ‘August 2018’ is our code for a whole world of silent, shared pain and loss. But after three years I feel I can look back with a tiny bit more perspective, so maybe it’s time to try and share.

It’s funny how precise our memories are, of moments of deep feeling. I still remember the hot room at work where I finally tracked down the result of our 12-week scan (the hospital had lost my number) and was told that our baby had a 1 in 20 chance of being affected by Down’s Syndrome. I remember the slow bus ride home with my husband that night, both of us lost in thought. I remember that after going for the non-invasive pre-natal blood test (NIPT – a very sensitive screening test for chromosomal anomalies) a few days later, I bought a crayfish and rocket sandwich afterwards from Pret. I remember when they emailed me to say the result had arrived we hurried home to take the call there. We were worried we’d missed the clinic for the day, so we called the nurse from a park bench near the train station (she said ‘why don’t you get home, and we’ll speak then’. That was when I knew). After the call we sat in silence, holding each other. Then we had to make something to eat (roast butternut squash with chilli and lime).

After that, the nightmare began. We had talked about this possibility briefly early in the pregnancy. I hadn’t doubted that I would want to continue, and my husband felt the same. I was someone who valued every person and every life, and cared about disability rights. I was also desperate to become a mother, and had already been through a miscarriage and failed IVF (though we had conceived this pregnancy naturally). To end a pregnancy because of a disability wasn’t the sort of thing I would ever do. Right?

My husband and I take all decisions together. Before August 2018, we used to laugh that it took us weeks of joint deliberation to choose a shade of white to paint our hallway. After we had the amniocentesis to confirm the diagnosis, the nurse explained the medical and long-term cognitive implications, and that we had a choice to continue, or end, the pregnancy. When we got home I asked my husband if he was willing for us to consider both options, and he was.

By some miracle we had a week of holiday lined up, so we didn’t need to think about getting time off work. We cancelled the holiday and started informing ourselves, frantically talking to everyone we could think of. We were confident in our ability to care for our child, but worried about everything else. We spoke to the nurses about the medical conditions that often accompany Down’s Syndrome. We spoke to the Down’s Syndrome Association. We spoke to a local mum of a teenage girl with Down’s Syndrome. We spoke to our local authority’s adult social care department, to find out what support adults with Down’s Syndrome receive to allow them to live independently. We spoke to an organisation that runs residential communities of adults with cognitive disabilities like Down’s Syndrome. We spoke to Antenatal Results and Choices (ARC). They could see we were in trouble and that our instincts were taking us in different directions, so referred us to a psychotherapist experienced in this field. We shared what was going on with our parents, but they knew it had to be our decision. When I wasn’t making calls or anxiously scouring the websites of Mind or the Down’s Syndrome Association, I went to bed and cried. I don’t know if I was crying more for me or my baby. I was crying for the straightforward happiness I had been enjoying only a few days earlier. I was crying for my baby’s vulnerability. I was crying because I felt trapped. My husband and I admitted that we were each silently hoping for a miscarriage, so we wouldn’t have to face this choice.

It was as though we hoped that eventually we would find the person who would help us know what to do, the fact that would make the answer clear. Of course there is no such person, no such fact. And although it took us ten days to reach a way forward, I think I intuited sooner, that I wanted to end the pregnancy. And my husband knew sooner that he didn’t. The nurse called every day or so to ask how we were doing, and if we had reached a decision. Finally, after the hardest of conversations with my husband - I still think about it, every time I walk into that room in our house - we had an answer for her. I was going to end the pregnancy. I knew I wanted to give birth to the baby (a medical termination) rather than have a surgical termination, though I begged the nurse to let me give birth somewhere other than a maternity ward (she explained that wasn’t an option). I was induced a few days later at 17 weeks three days. The midwife stayed with us through the whole long, painful night of labour, and I gave birth to the sound of newborns crying in the next room. In the morning we were shown into a room to say goodbye to our baby. The nurse retreated and shut the door as we clung to each other; my husband made a noise like a wounded animal, while I was frozen and numb. I will never forget the guy who ran the hospital morgue. He met and gently talked to me when I turned up two days after being discharged, anxious to give him tiny blankets to keep the baby warm. The hospital arranged a service and a burial a few weeks later.

It’s hard to explain the reasons for my decision, and it’s not really the point of writing this, because few things can be more deeply personal. What I felt could be totally different to what others in the same situation feel. But I know I could not get one image out of my head. It was a funeral - the funeral of me or my husband, whichever of us went last. Our middle-aged child was there, walking away from the grave. I could not get past the thought of how alone he would be (after the birth we were told it was a boy). He would be an only child – after this, we knew we would have to stop trying, and I was 40 in any case and with a diagnosis of diminished ovarian reserve. The people who had loved him all his life, and loved me and my husband, would be dead or dying – our parents long gone, our brothers and sisters very elderly. He would have cousins, but they would be in middle age themselves, busy with their lives, possibly scattered around the world. I hoped he would have friends, perhaps a partner, but who would really be his advocate? I knew that Down’s Syndrome is a spectrum, with some individuals better able to live independently than others, but even in a good case scenario he would be vulnerable.

Time and again I came back to the fact that he would be reliant on professionals – the good, the bad, and the indifferent. He would be subject to the vagaries of public policy and local authority budgets for some of his most basic needs. I know how dedicated care professionals are, but professional dedication is not the same as love. I just could not get used to the thought that he would have no family to fight for him. We thought about whether we could use egg donation to try to have more children, so he would have siblings. But I concluded that bringing children into the world, especially donor-conceived children, with the main motivation that they could become adult carers for our son, wasn’t something I felt comfortable with.

And though it’s harder to admit, there was another feeling too. Hot, burning shame, curling its way through my body. I thought I had pulled it off, but I hadn’t. The game was up. I had failed to get my shit together - find a partner, start a family - early enough. It didn’t matter that I know life is complicated, that people don’t always meet their life partner at a convenient age. That even at 40, the odds of a typical pregnancy had been good (about 1% of pregnancies in women of 40 are affected by Down’s Syndrome). The sense of shame at my own failure was overwhelming, and mingled with the rational considerations. The judgemental critics who tut-tut at women in their 30s like me who haven’t had children yet had been proven right, and my child would be the world’s daily proof of it.

But ending a pregnancy due to Down’s Syndrome is also deeply shameful. I have told very few people, even very close friends, what happened - because I am ashamed. It laid waste to the image of myself I had before it happened, the delusions I held about my character. All of my friends are pro-choice, but terminating a much-wanted pregnancy because of Down’s Syndrome raises a different set of issues, and I fear others’ judgement. I realise even as I write this that my own words are full of self-criticism. That’s how shame works though, isn’t it? At some level you believe the stories that cast you in the shameful role.

We had a very jumpy few months afterwards, trying to decide if we should try again and whether we would screen if there was a next time, all while dealing with our raw, unprocessed grief. I felt sheer panic when my husband initially said he would not want to screen. Over the months it got easier: we did start trying, and we put the screening issue to one side until we had both recovered a bit.

I have never regretted my decision, though I know our child was a gift, would have brought us the most incredible joy, and I hope would have lived a good life. I feel that loss, and I feel it especially for my husband, who has a huge capacity for connection with children. Part of the decision was accepting that I would probably never be a mother, because I knew that was now by far the most likely outcome.

Despite knowing I would screen again, I have mixed feelings about the screening programme. It seems to me that as humans we’re just not built for that sort of knowledge, that sort of decision. It’s no exaggeration to say the experience of having to make that choice broke us both. I feel my husband’s view reflected optimism, trust and a certain idealism – a view that the world should be equipped to support individuals with Down’s Syndrome at every stage of their lives, and it’s not going to happen unless people like us have our babies and fight for their rights. Whereas my view was the pragmatic one, the cautious and mistrustful one, sceptical that the world is a good and caring enough place to cast my son out into alone.

You might think the moral of the story is: don’t import the abortion debate into your marriage. Half a century of people shouting at each other hasn’t solved this one. But actually the experience deepened our bond. My husband and I couldn’t agree, but we shared and we listened, and we always respected the other’s view. And though we might still struggle to talk about it three years on, we both know we loved our baby, and we both know the pain of August 2018 in our bones, and we will share that knowledge forever.

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