Then by this time we were, we were talking to the midwife and she was sort of – we were ringing her – and whatever. And by this time I’d made the decision that I was going to terminate the pregnancy, which was the hardest decision I’ve ever had to make in my life. It was, it was torment, pure torment.

It wasn’t, it wasn’t easy, it wasn’t straightforward. It was… my emotions were just all over the place. I was, you know, the little gremlins in the back of your head saying, ‘You can’t do this, you can’t do this. And then there was another one saying, ‘It’s the best thing. And everything, my head was just about to explode.

I felt more informed, and I felt that that was what I needed in my head to see you know, that I’ve got to accept now that this, all these things are real on the screen and this was really my baby that’s suffering all these things, but I was sad as well. Hugely upset that to think that, the baby was so poorly. And I felt the weight of deciding what to do about it.

And at the end of the day however much we talked about it – that it was going to be the two of us to make the decision and me to actually you know, go through it, and decide that that was what was going to happen for him and I just, I didn’t want to do it. But you know I knew we had to make a decision that was right for the baby as well.

And still we asked to see a paediatrician to speak about, you know, what these things meant for the baby. And we spoke to lots of different people, and I think we were desperately looking for someone in the hospital who would say you know, ‘Theres a glimmer of hope or ‘I could do this for the baby’ – and there wasn’t anyone anywhere in the hospital who could offer the baby a better outcome.

And basically, we were just told that, that he was dying, and that really it was my body that was just keeping him going – and I wasn’t very well – and that that was possibly toxins from the baby that were in my system and they, they really didn’t know how the pregnancy would continue if we had continued. And that it, if he was born… that most – I think they said, about 50% percent of Edwards’ syndrome babies would die within the first 6 months, and the other 50% within the first 12 months – and that our baby had the full syndrome, so it affected all parts of his body and that his brain wasn’t properly developed. So there wasn’t any future for him, and that we wouldn’t be able to ever take him home. So that even that sort of the option of, you know, having him at home and just caring for him wasn’t going to be open to us.

If our baby had these operations, or operation, there was a chance she may not have survived and she would have died in the surgery. And if shed have survived that one long-term [that] children who were going through this surgery were often being tube-fed, they were in hospital for long periods of time, and then they would be facing another, major surgery. Again going through this type of lifestyle where they were constantly being operated on, development was delayed because of being hospitalised.

Also again if shed gone through the third surgery, the chances that she would have been able to run around the garden but probably quite small. Being constantly perhaps on antibiotics for various different illnesses, and also being very careful that she didn’t catch anything – because of her condition she would have been very vulnerable.

All these types of issues were a major concern to us. And to watch our daughter sort of growing up knowing that she wouldn’t be able to take part fully, not fully because, but to take part in some of the activities that you expect from a, from a child, would have been heartbreaking. And to know it would be suffering in itself apart from the physical suffering as well. And we wouldn’t allow that to happen to her.

Mother: For me it was when the neurologist said that this baby will have no quality of life, and it will not know that it exists.

Father: It was the last time we went for an appointment, wasn’t it?

Mother: It won’t know that it’s existing, and I just thought then – and we talked about it.

Father: She used the phrase, “even if the baby survives”.

Mother: And I wouldn’t want to put a child of mine through the suffering of dying. And we have a daughter, and at the time, two and a half, could you cope with a dying baby, and a two and a half year old? Is it fair to her? Is it fair to us?

Father: Well, they said it might not survive the labour, or even as long as that, anyway.

Mother: I’d have hated to have seen any child of mine go through any pain.

And occasionally the debate will come round about reducing the, the limit to, of 24 weeks gestation, reducing that down for termination. And I think it’s just that frustration that, you know, it, you know, the tabloids or the newspapers, it’s all done very dramatically and it’s like nobody’s stopped to consider that a small percentage of people having to have terminations at such a late stage that in fact what position those people are in. I don’t think theres many people having terminations at 24 weeks because they’ve decided they don’t want the baby, you know;

And it’s that frustration that the people, whoever you’re talking about, the politicians or the people who have views on it, haven’t stopped to think what it must be like to find out that, you know, this much-wanted baby you’ve got actually has, you know, has got abnormalities;

And I suppose as well, as you know I was saying before, you know, we found that our baby had got a fatal abnormality where her quality of life was going to be debatable, really. I couldn’t see that there was going to be any quality of life, therefore I almost felt a sense that ethically it, you know, it could, it might have been ethically or unethical to continue and for her to have a horrible, you know, suffering, you know, days or weeks, perhaps it was more ethical for her to die of her prematurity than of her abnormality;

But there is this just, this presumption, I suppose, of termination of pregnancy means that you’re terminating a pregnancy because you don’t want the baby. You know, theres no mention of the much-wanted baby or… So when that debate comes up it just frustrates me because they never ask anybody who’s actually been there, and I think it’s one of those, until you’re there you can’t imagine how you’re going to feel;

Yeah, if shed have been born at term and for example, lived for a week, you could have say, ‘Well, that would have been nice to have had her for a week,’ but she would have been suffering terribly so it, I just think it’s purely selfish reason for me, for my benefit, that I would have liked to have had her a little bit longer. But for her that, for, you know, and for us as a family, and I believe that for her it was best that she died of prematurity and therefore died peacefully, you know, without;

I read a few stories of peoples experience of living with a child with Patau’s syndrome and, for me, as I read it I just thought, ‘Not for my daughter, no way. You know, I just thought, theres no quality here, and plus I suppose, again, my experience of perhaps looking after some children at work, that I’ve seen that are so poorly, and it is, it’s terrible and you just think, ‘Not for my child’;

You know, in that the position that you were given a choice and you’ve got a decision to make on behalf of your child, far as it was quite easy, you know – not easy but the decision came – and I never had any regrets, and 100% you know [I] was sure that that was right for us;

Mother’s We went back Monday morning to see the specialist, and she said, yes, there was something wrong with the heart, and the head was not the right shape – strawberry-shaped – and she couldn’t actually find a stomach on the baby. She couldn’t say, she thought probably 80 per cent chance of Edwards. She couldn’t say without a, and our choices were then to have an amniocentesis, or she could arrange for a specialist to see us in [city] for the heart, which we opted for.

And just because there was an appointment free, we got one the next day, went up to the specialist in [city]. And, yes, the heart, there was at least 3 major heart defects, which would have meant an operation at about a few days old, an operation at a few months old, an operation at a few years old, and our baby would never have a healthy normal heart. She would always have problems. And I, there and then we didn’t… well… we had the decision then to terminate.

Father’s Yes.

Mother’s We didn’t actually discuss it I have to say. We didn’t, we didn’t discuss it, did we? I don’t know how we…

Father’s Well, we, they told us everything, showed us, he drew diagrams of what he thought was going on, and this… and he explained what would happen, you know. And so really the, it was so, he was very good, wasn’t he?

Mother’s Mmm.

Father’s He explained it so well, that it was pretty obvious that the child wouldn’t have a very good life.

Mother’s Quality of life.

Father’s Quality of life.

Mother’s We didn’t sit and discuss it. We were, we were sort of shown into a room with a midwife, and it was then said, sort of said, you know, ‘You should decide the future from now on, you could have an amniocentesis. He again strongly suspected Edwards’ syndrome. In which case Edwards’ syndrome babies don’t survive anyway.

Father’s No.

Mother’s They’re non-compatible with life. Or we could, you know, carry on with the pregnancy, even if it did have Edwards’ syndrome. Or if it was just the heart defects, carry on and have operations. But we didn’t, I mean we just sort of, to us it was obvious to terminate I think. You know, we didn’t need to discuss it with each other. We both felt…

Father’s Yes.

Mother’s The baby wouldn’t have had a quality of life. At best it wouldn’t have…

Father’s My feeling was that it was cruel. It would have been more cruel to, for the baby to go full term and then die naturally, or suffer and die than it was to terminate. And that’s how I looked at it, and still do.

I think it was just too much to really remember. I was just devastated, but numb I think. I just didn’t really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don’t think the full extent of it had hit us by then.

We sat waiting for the consultant and she came in. And she was absolutely great. And she came in and she said, ‘Hi Mum, hi Dad,’ to us. And she was a really nice woman – a bit eccentric but really nice – and she said, ‘Look, this baby is not very well, the abnormalities weve found with the heart and the limbs,’ and she said, ‘At the moment it doesn’t look like. The problems the baby’s got are looking like they will be incompatible with life. That’s the words that she used.

And again that was a shock because a hole in the heart is something what you think can be operated on, and short limbs, well, maybe they would grow or they, we did, it wasn’t something we were expecting, I don’t think, that she just said. So from pretty much the word go we were told that the problems the baby had at 20 weeks were incompatible with life.

Which really, from that moment on I felt I didn’t have a problem with making a decision. So that wasn’t part of the problem for us. It was, the decision in a way was taken away from us because we were told, ‘Your baby will not live. So we didn’t have that choice of saying, ‘Well, we could have a disabled baby or we could have a baby with this problem or the baby would need x amount of operations.

Pretty much from the word go we were told that the baby was ‘incompatible with life, and it would be a case of between the 20 weeks and the full term that the baby wouldn’t survive and really it just depended on the timing I think.

I think, the way it had been explained to us, we felt we had no choice but to terminate, because baby – I think the phrase that is used, and it comes up in medical dictionaries – is ‘incompatible with life. And that phrase certainly came up that evening. And I think it was used again the next morning when I went to the early pregnancy clinic.

I was there very early in the morning – well I was waiting for it to open. And at that point I think it was just, we felt there was no other option. There was no point in continuing with the pregnancy because if the baby died at that point then, what I see as a small blessing was I was still in 12 weeks, time slot for a termination rather than have to go through labour.

Yes, I think, something that really struck me was when I was my, the older twins’ godmother has a brother who has Down’s syndrome, who’s older who must now be, he must be 42 now. And I remember her saying to me when I found out that our son had Down’s syndrome, I remember her saying to me, she said, ‘You know he does know that hes very different, don’t you?’ And I said, ‘Well, what do you mean?’ She said, ‘Well, just because hes mentally retarded, you know. He would regularly say to her, ‘Why am I different? Why are people so horrible to me?’ Because as a child, children are cruel, and therefore he had a very difficult time I think.

And I think, I always used to think he wasn’t really aware, because of the mental issues he had that actually it went over his head. And when she said that he was very aware as to what was going on, and how hurt he became, and I thought, ‘Wow I’ve never kind of seen it from that side I suppose. And I just came back to, I just did not want that for my son really.

We came back, and when you’re actually faced with actually having to do it, and actually think about it, it’s not as clear-cut as that.

So we discussed it for a week and I certainly wasn’t sure to start with, certainly I wasn’t certain about what I wanted to do because I was still very unclear about the final prognosis and, actually how likely we were to have a severely disabled child. Because they weren’t able to actually say, ‘We can categorically tell you that this will be the outcome of the pregnancy if you continue it – that the baby will be blind, the baby will be deaf, the baby will…. They were unable to give any sort of idea as to the severity, which made it very difficult, actually.

We weren’t making a decision based upon anything other than, ‘This is what we think will happen. This is what is likely happen. So I found that quite difficult and kept thinking, ‘Well maybe it will be okay – maybe things won’t be so bad.

We did look at a, on the internet at, for a lot of information, specifically the development of babies’ lungs, and how they are affected with lack of amniotic fluid. And it did actually become quite apparent that there would be no further development of the baby’s lungs, and if I went back to when I think the amniotic fluid may have leaked, the baby’s lungs would have been between 19 and 20 weeks, and that’s very immature lungs to expect to be able to sustain life.