THE HARDEST THING

The Guardian - May 31, 2003
http://www.guardian.co.uk/Print/0,3858,4679153,00.html
The hardest thing I have ever done

Emma Loach was 20 weeks' pregnant when a routine scan revealed that the baby she was expecting had Down's syndrome and heart problems. She describes having to make a momentous decision very quickly, and the ferment of relief, guilt and grief that followed

On January 18, my baby was born, at 23 weeks - a little boy. He was tiny, perfect and a Down's syndrome baby. The decision to terminate the pregnancy was my partner's and mine. Our nightmare began when I went for my 20-week scan. I popped out from work, telling my boss I'd be back in half an hour. Previous scans in this pregnancy and with my first child had been fun - a chance to see the baby wriggling around and perhaps find out its sex. After half an hour of lying on the bed, I was starting to get nervous, but was excited to find out that the baby would be a boy and that I could see his little heart beating strongly. He looked fine. I couldn't work out what was taking so long and put it down to the doctor being young and inexperienced. An hour passed and I started to panic. It was all going wrong and I wanted to get as far away from the hospital as possible.

Eventually, the doctor finished the scan and said that some of the baby's measurements were very small. There were also two spots on his heart, which were "soft markers" for Down's syndrome. I was given a leaflet and told to return four days later to see the consultant.

By the time I left the hospital, I was in shock. Elliot, my partner, was away working and was waiting to hear whether he was having a son or daughter. When I told him what had happened, he refused to believe anything was wrong and said he'd sort it out when he came home. He was sure the consultant on Monday would see that the measurements were completely normal and that there was nothing to worry about. I should stop being dramatic and pessimistic.

But my brain had been given a train of thought that was impossible to stop. My baby might have Down's syndrome. Or, at the very least, heart problems. All my plans were beginning to fall down. The nursery I had selected for our two-year-old son; my maternity leave; the bunk beds; the summer holiday suitable for a newborn baby. For once in my life, I had been organised.

Elliot spent the weekend trying to convince me that things were OK. The baby was kicking so hard that I began to believe him. He felt strong and fit and healthy. My belly was growing and I was feeling great. Except for the persistent, nagging doubts.

Finally, Monday came and Elliot and I went back to the hospital. We saw the consultant, who was reassuring, saying that he would rescan me and was sure everything would be fine. There was complete silence during the scan. I could hardly breathe. I was willing the results to be normal. Elliot's face was lit up, seeing the baby for the first time. He looked excited. But the consultant had found more spots on the heart and the measurements were the same. There was cause for concern. Still, the consultant thought things would be OK. He suggested he perform an amniocentesis immediately, to rule out any chromosomal problems.

I had never imagined having an amniocentesis. I was young, I didn't need one. And I thought that if I were faced with the possibility of having an amnio, hours of discussion would follow - I would spend days mulling it over. But here I was, minutes later, lying down, waiting. No discussion, no quiet contemplation. Just doing it. It was horrible. All my instincts were to protect my belly, yet here I was allowing someone to stick a huge needle into it. I had to stop myself from yanking out the needle. It felt so wrong.

The results come in stages. The first result, which tells you if the baby has Down's syndrome, is ready in three days, but the other chromosomal problems cannot be eliminated for up to three weeks.

So we went home, me to rest in an attempt to prevent miscarriage, Elliot to reassure us both. We were convinced everything would be OK. It seemed inconceivable that we would not be having a baby in May.

On the third day, we got a phone call. I was sat on the sofa working, Samuel was at nursery and Elliot was in the bath. It was another consultant, who said, "I'm afraid I have some bad news - your baby has Down's syndrome." Somehow, I walked from the sofa up to the bathroom and told Elliot. We were told to go to the hospital immediately.

I broke down and started hitting my disgusting body that had done this. Elliot tried to remain calm, and at my request rang my mum. But before he could speak, he, too, had broken down. That was the first time I had heard Elliot cry. He sounded like a wild animal in pain, deep pain. It is a noise that will stay with me for ever. I managed to tell my mum, who said she would come with us to the hospital.

As soon as we arrived, we were shown to this little room. I noticed the box of tissues on the table. Not a good sign in a hospital consulting room. The consultant showed us the letter with our result on and, yes, there were the words "Down's syndrome". It was real. The consultant explained that this was just very bad luck and not, as far as they knew, genetic. He then told us what the prognosis would mean for the child. Life expectancy of 30 or 40. Never being able to look after himself. Likely to have serious medical problems all his life. And also what the prognosis would mean for Samuel: now a very happy child, he would have a completely different childhood with such an ill sibling. And Elliot and I would have a completely different life from the one we'd imagined.

Immediately I knew what decision we should take. And I assumed Elliot would feel the same. We would terminate the pregnancy. But he was not sure. He wanted to talk about it, but I didn't. I didn't want to be convincing him to agree with me. I couldn't have the added responsibility for changing his mind. He had to come to the decision by himself. So he went out for a walk. When he came back, he agreed on a termination. I had a horrible feeling of relief. I hated my body and hated every feeling I was having. It was sick.

But worse was to come. I hadn't thought about the mechanics of such a late termination, but had assumed it would mean some kind of operation. I would be put to sleep, and when I woke up I wouldn't be pregnant any more. But no. I had to take a tablet there and then, under the supervision of a nurse, to end the pregnancy. Then, three days later, I would go to the labour ward - the ward I had been expecting to visit in two and a half months. There, I would give birth.

Forcing my hand to my mouth to take the tablet was probably the hardest thing I have ever done. By my own hand, I had to end the pregnancy. I wanted to be a passive patient while the doctor did what he had to do. Instead, I had to raise a glass of water to my mouth, take a swig and swallow the tablet. I was disgusted - disgusted that such a tablet existed, let alone that I should have to take it.

I swallowed the tablet and we left the building. We walked all the way home. The baby kicked, blissfully unaware of what I had done. The ultimate betrayal.

I don't know how we got through the next couple of days. Elliot and I felt as if we were in limbo. We didn't feel we could tell anyone what was happening. We couldn't say we'd lost the baby, because he was still kicking away, but we couldn't pretend everything was fine, either. So we hid in our house. I tried not to sit still for too long, because then I became too aware of the little thing inside me. Nights were impossible. We talked all night and thanked God for crap television.

All the time, the baby was kicking and I felt like a murderer waiting to strike her victim. I used to think the feeling of your baby kicking inside you and the sight of a foot poking against your skin were the most fantastic things in the world. But for those few days they were torture. It felt as if we had gone power crazy. Elliot and I had so much power, we could decide that this little thing should die. We were denying him his life. It was far too much power; neither of us wanted it.

The people who did know what was going on seemed far too sure that we were doing the right thing, that there was really no choice to be made. But that was too easy. Abortion has never raised any moral dilemmas for me and I am an atheist, so there are no religious issues. But I still didn't want to be the one who stopped this baby's chance to live. Like many things, the theory is very different from the reality. I had no idea if we were doing the "right" thing. And I couldn't escape the feeling that I was being selfish. Intellectually, I knew this was not the case. I was saving my child from pain and suffering. The termination would be averting a tragedy. It would be a personal tragedy for Elliot and me, but that is all. And, faced with feeling sorry for myself or feeling sorry for my child, I know which I'd choose. Instinctively, did it feel right? I didn't have a clue. I didn't think my instincts were worth much. For five months my body had known there was something wrong, yet I had felt fantastic. So I no longer trusted my instincts.

All I knew was that it felt sick.

Saturday came. My mum arrived early to look after Samuel, and Elliot and I got a cab to the hospital. Entering the labour ward, I waited for someone to say, "Go home, you are 16 weeks too early." But they didn't. Instead, we were shown to a room slightly away from the rest of the ward and the midwife stayed with us to talk through what was going to happen. The midwife was on the verge of tears and I felt responsible. Soon, the doctor came and inserted the tablets that would induce labour. We talked about the different sorts of pain relief I could have and I opted for a morphine drip, which I could control.

And so began the most bizarre day of my life. The contractions started very quickly and within an hour my waters had broken. We thought it would all be over very quickly but, in fact, it was another 11 hours before the baby was delivered. I know I could have delivered him in a quarter of the time, but I couldn't bear the thought of him leaving me. I couldn't bring myself to push. However painful and traumatic the labour was, it was better than what would happen at the end of it.

So I lay on the bed and Elliot sat next to me. Three midwives came and went. And with each one we had to have the same conversations. We had to discuss what we wanted to do with the little body after delivery. We both thought we would like some good to come out of this horrible experience, so wanted to talk to somebody about the possibility of using the body for research purposes. However, at the time neither of us could articulate that. We just couldn't use the words. And so we talked about it euphemistically, never saying the word "research". The first midwife seemed to understand what we were trying to say, and said she would ask the doctor to come and talk to us. The doctor didn't come. On the next shift, the new midwife asked us again. We had the same conversation, but obviously were not making any sense to her at all. So, in the end, we said we would arrange our own funeral. However, a few hours later there was another shift change. Again, no notes can have been written down because the midwife asked the same question. What would we like to do with the body? By this time, we were tired. Rather sharply, Elliot tried to explain. Again, we weren't understood. So we gave up and said we'd arrange the funeral ourselves.

By 7pm, I still hadn't delivered the baby. Eventually, the midwife said to us very sweetly, "I think we should deliver the baby now." And I knew there was no way out. It took 20 minutes to push him out. And for that whole time, Elliot and I were both crying uncontrollably. The consultant had said it wouldn't be like a normal delivery. But he was wrong. It was exactly like the labour I had with my first child. The same rush of excitement. The same sense of expectation. The same anticipation. The same anxious wait for a little, pathetic cry. Only this time, no cry came. Elliot watched the baby come out, and for a split second I saw a look of joy on his face. The same unique expression he had when he saw Samuel born.

I couldn't bear to see the baby and asked the midwife to take him away immediately. Elliot went out with him, wanting to see him.

So that was it. It was over. And I felt like a murderer.

Later, I did see and hold our baby. Elliot really wanted me to, and by that time I had no sense of what was right or what I should do. So I trusted Elliot. And thank God I did. Our baby was beautiful. Looked exactly like Samuel as a baby. I loved him instantly and didn't want to let him go.

We left the hospital a couple of hours later. Thinking back, I don't know how we left without him. I guess the morphine made it easier.

The weeks since that day have been very weird. We had the baby cremated. No one else attended and we didn't have a service. We didn't name him. We scattered his ashes over a bunch of snowdrops.

At first, I still had to deal with the physical implications of having given birth. The milk came and stayed for what seemed like for ever. Enough for two weeks after he had been cremated. Another sick joke.

And I am slowly coming to terms with what has happened. I just feel very unlucky. I have a terrible hatred of pregnant women and a new respect for infertile couples. Living in this world must be unbearable for them. Everywhere you look, there are happy, fat, smug pregnant women. It is impossible to escape them and each one underlines your loss.

I have horrible thoughts. I think the whole experience has made me a pretty nasty person. As though I went power mad for a week, killing my innocent unborn child, and now I am tainted for ever. I am a darker, harder version of myself. I give pregnant women dirty looks. I get terribly irritated by my close friends and family. I've realised that being a nice person is a luxury some can't afford. Being generous and kind generally happens only when you're happy. Being deeply unhappy and kind to others at the same time is nigh on impossible. Because, when you're angry with the world for dealing you such a shit time, you begin to hate the people who populate it. And attribute some blame to them. The "why me?" factor is very strong. Why me and not you, you bastard?

As I say, I'm not a very nice person at the moment.

Not surprisingly, people aren't quite sure how to deal with me. No one else ever met the object of my grief. No one else but Elliot saw how similar he was to Samuel. No one else felt him kick. It feels very lonely and isolating. And, sometimes, I wish I had invited my whole family into the hospital room to see him.

Perhaps because we are alone in this, it has brought Elliot and me very close. At first the closeness came through a sense of guilt. Never lacking a sense of the dramatic, it felt as if we shared the responsibility for the terrible, dirty act that we had committed. It felt as if we'd gone underground, that we were part of the criminal fraternity. Nice people shouldn't hear about what we'd done. We were bound to each other because of the blood that was on both our hands.

But the closeness has remained after the drama has died down. We've got the same battle scars. We understand the real meaning of "shit happens". We've joined the grown-ups and we both feel very different. Slightly marked from our peers. Our position in our families has shifted. As two youngest siblings, we were both permanently stuck in the irresponsible, childish role. But now that's changed. It is as though our pain means we've earned the right to be taken more seriously.

I give obsessively to charity, especially those linked to sick children. It doesn't remove the guilt, but I don't know what else to do. When I see a child with Down's syndrome, I have a tremendous need to explain myself and apologise a million times over. Apologise for somehow doubting their right to be in this world. And, for a few hours, I'm convinced I've made a terrible mistake. Maybe our son would have overcome his problems, survived his illnesses, led a happy life. Maybe.

I know it is still early days. And I know I can't hurry up the process of grieving. But it's bloody hard being miserable the whole time. I just want to be normal again. Not marginalised into being a victim. I want to enjoy my son again, without any reservations. I want to stop having such horrible thoughts. I want to be happy again. I want to be nice again.

And I want to be pregnant.

C Emma Loach 2003