What would you say to other parents thinking about whether or not to have screening?

Well, I suppose you have to do the same as we did, and weigh up the risks, and what is the worst outcome for you. For us it would be worse if wed had a Down’s baby, so we decided that wed rather take the risk of amnio than take the risk of not knowing and possibly having a Down’s baby. But each person has to weigh up their own worst case scenario, I think, and use that as a guide.

Would you recommend to people that they should think about what their attitude would be if they’re told that their baby has something wrong before they get to that point, or do you think it’s not something you can anticipate what your reactions will be?

You can anticipate, but you may, you have to be very prepared to change your mind, I think, because you never know how you’re going to react in such a situation as that, until it really happens. Hypothetical situations are all very well, but it’s, you know, you can never envisage exactly how you’re going to react. When that happened to us, I don’t know, wed never had a, neither of us had had a parent die or any other sort of close death in the family like that. We didn’t, that was like truly the worst thing that had ever happened to us.

And I didn’t have any idea how I was going to cope with such a disaster. You know, we just didn’t know how we were going to deal with that and how we were going to react to it. And you can never anticipate, really, how you cope until you’re in that situation. And then we were actually amazed at, at how well we did cope. I couldn’t believe that wed actually made it through, and survived such a thing.

When we went back for some follow up appointment X number of weeks later, and we sort of sat in the doctor’s office and said, ‘Well, here we are. Weve, you know, weve got this far. We can’t believe weve actually done it, and such an awful thing has happened, and weve turned the corner, and you know, we can look forward, sort of thing.

And were your feelings already beginning to change by this stage?

They were starting to change. It was kind of, I think when they suddenly said that the baby wasn’t having any feelings, then obviously explaining it to my mum as well, having like a third person’s point of view, and she was saying that, you know, ‘Do you still feel that you’re making the right decision?’

And basically going over the whole of about how the baby wasn’t feeling anything, that was there any point going full term? a) because of the worry emotionally for both of us and b) knowing the fact that, even though unselfishly we were saying that we wanted to carry on with the pregnancy because we wanted to do it for the baby’s sake – we didn’t care what it was going to do to us, we wanted to do it for the baby – that did it change now? Because obviously we knew the baby wouldn’t be able to feel anything that we were doing.

Which did change the perspective immensely, because it meant that we could look at the option of termination now, because at the end of the day it wouldn’t be selfish for us to terminate the pregnancy, because we would be doing the best thing for the baby and the best thing for us.

Which at the beginning didn’t feel like it was the best option, but then it was suddenly feeling like it was the best option, because if wed gone full term we then felt that we were being selfish because we were hanging on to this little life and keeping this little life going and putting its body through all of these struggles that it was going to have to go through to go full term, and then putting it through the struggle of the birth and not having an outcome to it.

And finding out that also the maximum I think an anencephaly baby has been alive is, I think it’s, I think it was 15 days, but that was on life support so it wasn’t actually alive.

I think it was me that ventured the unthinkable thought first. I said I didn’t think I could cope personally with a child who had very severe mental and physical problems, and that I was worried about the child dying shortly after birth. I didn’t think I wanted to go through that. And it was almost a relief when I’d said it. I’d been dreading saying it.

But when I said it he was, my husband was relieved, I think, that I’d said it and he could agree with me. I don’t know how it would have – I wasn’t sure when I said it whether he would agree with me or not – and I don’t know how things would have gone had he not agreed with me. I should imagine that’s a very difficult situation to be in.

The doctor who saw us, I had been expecting that he would have information for us, but he didn’t. He wasn’t able to answer any of our questions and he, I believe, thought he was there to take my consent to have the termination which was in fact what I did at the end of the meeting.

I gave him, I signed the form to say that I wanted the termination, but I was very, very upset. I cried through the whole meeting. I could hardly string two words together, because he just wasn’t able to answer any of the questions that I had, and I just felt that his presumption was that I would have the termination.

It was the most difficult decision I’ve ever had to make, and I felt almost that the gravity and the enormity of the responsibility was glossed over by one or two professionals, and that doctor in particular. He was very young, I assume a very junior doctor, and perhaps he had no experience of that situation himself. He didn’t perhaps empathize. He couldn’t put himself in our shoes.

For him it was a natural consequence, an inevitable consequence, whereas for us it wasn’t an inevitable consequence. It was something that we gave a lot of thought to, and a decision that we both found very, very difficult and we both, still today, whilst we don’t regret the decision we still regret aspects of the process of the decision.

Looking back over it and signing a consent form on a Friday afternoon, what would have been better about that?

I think it would have been helpful to have had an appointment to see a counsellor. I mean, I realise that the NHS resources are very badly stretched, and that these resources aren’t always in the right place at the right time, but that doctor clearly wasn’t a counsellor.

He clearly wasn’t an information provider, and he clearly wanted the appointment over and done with. And he wanted to achieve the purpose of the appointment as far as he was concerned, and that was to have the consent form signed.
I mean, he didn’t pressurise me to sign it. There was no, you know, I couldn’t accuse him of saying, ‘Come on, you must sign it’ or ‘Were really under pressure here or ‘We, you know, you’ve got to decide or anything like that. He didn’t. But he just, I guess he just wasn’t the right person for me to come in contact with at that time.

Did he say you could come back another time or…?

No, he didn’t. I don’t think he, I just don’t think he was experienced in dealing with that situation. I would guess that that was probably the first time hed ever had to deal with parents facing that decision.

We went to see a really nice consultant at the fetal unit, who said to us straight away with no lies and no, you know, airs and graces about him, ‘This is what I see, this is the head’ and he explained everything that he could see on the scan. ‘This is the spine and this is the problem. And it were quite a severe problem that hed picked up on, and then told us implications of that problem and a child being born with that kind of problem, and then gave us choices.

And did you feel you had enough information at that point about what it would mean to go ahead or to terminate?

I knew that, only through myself reading pregnancy books, I knew that a lot of spina bifida babies – although some with mild spina bifida can be operated on and virtually cured of it – I knew that those with even a sort of, you know, in-between case could be, have bladder weakness, incontinent, no use of the legs. So I knew that even if there were a little risk of that, I wouldn’t want a child to suffer if I had that choice. I wouldn’t want my child to suffer with things like that.

So you were already beginning to move towards a decision to end the pregnancy?

Yeah, over the weekend me and my husband had spoke whether if it was just a small operation that’d put things right, you know, wed go for it. If it were some, if it were a case where it were 50’50 we just decided that, you know, we couldn’t bring a child, you know, and we decided that, weve already made us decision before we went on Monday. Anything other than a miracle and we wouldn’t take the chance.

So did you have to tell them straight away what your decision was?

Yeah. We, when the consultant spoke to us about it he asked if wed thought about it over the weekend, and we said like, we said we wouldn’t want our child brought up like that and all of operations and things at birth, and it’d just be too risky. And wed already made us decision, which we were quite strong about, we weren’t umming and ahhing about it;

We both want-, wed made up us minds. So we were taken then into another room where I was given a tablet and then two days later for admission back to my local hospital to give birth.

I think, I just remember concentrating on how that would affect our family life I think. We had a daughter already, who was at school. I just remember thinking you know, heres a, were going to have, if we go ahead with this were going to have a baby who’s going to have two pretty critical operations within the first year of its life.

Then, you know, then it’s going to be sort of more of less OK. I think they’d need a third one before they were 5 or something, from memory. Obviously this is not going to be sort of an entirely normal healthy baby, because it’s going to be, I think, a blue baby or something until they’ve got at least the first couple of operations underway.

Then we also found out, they sort of said, ‘Well, the heart actually’ – because they sort of re-plumb the heart to get round the problem, the heart basically gets worn out by the time the baby, the person becomes middle-aged. So we then thought, you know, your, I don’t know, to know that you’ve got this clock ticking really inside you for this person as they grow up, you know, we just felt that, I don’t know.

I suppose if wed known that we could have, things could have been done so that baby could have then grown up to be, have a normal life without other risks of heart wearing out and other sorts of things, you know, the having to still get through the big operations, it would have been something different. And we just thought, ‘Well, you know, heres our daughter. We owe her our attention as well. Weve already committed to her by having her. You know, we just felt that that wasn’t the right decision for us.

Mother’But yeah, once we knew it was the most severe case and once the consultant looked at me and said, ‘How pregnant are you?’ And I told him, and he said, ‘I can’t believe you’re still pregnant. Most of these are gone by 11 weeks. And that’s when I kind of concluded that I was trying to miscarry for thirty days and my body just held on. And it was a bit cruel, really, that my body held on but…

Did you think about just letting nature take its course?

Mother’I don’t think we ever did.

Father’No, I don’t think so. I mean, we had, because of circumstances we had, you know, time to think about what we were doing. You know, it wasn’t a ‘see the consultant and then 24 hours later proceed with the, the termination.

Mother’We actually waited.

Father’There was a fairly lengthy period. So we had time to reflect.

Mother’Because at that point I would have to give birth anyway. So we waited about a week and a half before we did that, which was…

Father’And there were moments when we, you know, you have doubts. You think to yourself, ‘Is this right? Are we playing God?’ and so on, you know. ‘Should nature take its course?’

Mother’We still don’t know that we did the right thing. We just, we made the best decision we could with the facts that we had at the time and we did what we thought would be the best for us as a family and for our child. You know, I can’t say that we only did it for our child. We did consider us as a family and taking care of a child, and not knowing how bad it was going to be, if she was born alive.

I mean, the consultant said, ‘I don’t think shell be born alive, and if she is born alive shes going to need instant surgery, and I don’t give her long. Five years tops. And I thought, ‘I don’t want my child to suffer. I would rather have to live with this the rest of my life than to see my child full of tubes and know that . . .

I felt that was selfish for me to do, just so that I wouldn’t have to deal with what we now have to live with. But it was just heartbreaking to have that be our first decision as parents. So that’s the hardest part.

It was a relief to have the diagnosis, so that we knew what we were facing. And after, just after all the medical fuss and we just, we had a result. And then we discussed about Edwards’ Syndrome and there really was no choice at that point. We just said, ‘Well, the condition is incompatible with life, so therefore weve got to end the life,’ and that was that, really;

We didn’t, we were totally together on our decision, which I can understand if two, if people, one person wants one thing and another person wants another, it must be just awful. But wed, by that stage, were totally together in our decision.

And this was a position you’d never really contemplated yourselves being in?

No, never, never. Were just happy-go-lucky people and wed decided, ‘Right, now is the time to have a baby’ and we just thought everything would be fine.

So what happened when you went back to the local hospital?

We went back and we were, again, went through the waiting room with, the 12 week scan waiting room and then we were shown into a cubby-hole, it seemed like, with the books, the bookcase on the wall with all books about fetal abnormalities which you see everywhere. And we sat there and we had to wait for the consultant to come down. Then she came down, and at that point said that I would definitely have to go through labour to have a termination, and just waited for us to make our decision.

Has anybody ever talked to you subsequently about whether you did have to go through labour?

No, no but I have found out since that at 15 weeks I probably didn’t have to. I was made aware, I mean initially I thought that you could probably have a termination up to 20 weeks under a general anaesthetic. I had no knowledge about terminations, really, but ARC [Antenatal Results and Choices] had spoken to me about the possibility that I would have to go through labour, and for me to think about whether I wanted to see the baby or not. So I had, I was slightly aware of it before I went to see the consultant.

And did she give you much in the way of detail of what would be involved in termination?

No.

What more should she have told you that you didn’t get from her?

Exactly how the process would work. We were just told that we had to go in one day and take a tablet, then go away and come back again. That’s was all she said and there was no discussion about whether we wanted to see the baby, how long the whole thing might take;

It was basically just, ‘Hurry up, make your, make your mind up, sort of thing, and tell me when you want to come in. There was a miscarriage specialist there, miscarriage nurse there, who was great. But again, she was specialised in miscarriage and not termination after results that I’d been given;

And I think really there should be a person, a counsellor or somebody at some stage from every local hospital to give you support, who’s got knowledge about people who’ve been diagnosed with carrying a child with, who’s got a chromosome abnormality.