Antenatal Screening

We didn't go on the Internet. I think from memory that one of the nurses there had actually said, 'If I were you I wouldn't go on the Internet. Just take in what we've told you today.' I don't, I can't remember if they gave us anything written down or leaflets of anything, but I think they, she advised not to go on the internet, because I think you can do more harm than good, I think, to go away and scare yourself silly, really. 'Just go home and think about it.' 

And then they didn't talk, because I think, I remember almost immediately thinking - because they explained about the operations and things the first day that would be necessary for the baby if we were going to continue - but they didn't talk anything about not continuing. And I know I'd thought immediately, 'Does everybody continue? You know, is there a choice of not continuing, and what happens?'  

But they didn't talk anything about that on the first day. And the next day, obviously we'd talked when we got home - I can't remember whether we'd even talked about not continuing that day. I think we were pretty stunned. We were both determined I think to - we didn't know what to do with ourselves, so we actually both went back to work and just carried on like sort of, I don't know, like, 'I'll keep my mind off of thinking about it, because I'm going to go back to work and I'm going to pretend it hasn't happened, and I'm, you know, going to carry on' sort of thing, so. 

The next day they did talk about options, and said, you know, 'Termination is an option, or carrying on is an option', and you know, I suppose they sort of introduced that topic, because some people might not want to terminate and might be very, very against even mentioning it.  

So they were very sensitive about the way they introduced that, to, you know, and we sort of said, 'Well, actually that is something that we had thought of.' So we must have talked about it, because I remember saying, 'Yes, we'd thought about that, and we were interested to know more about what that would involve.' So they explained more about that, whereas the day before they'd concentrated more about the kind of, the survival aspects, I suppose, so.

Just the facts about the condition?

Yes.
 

Because this was, as I said, about half past nine in the end, by, they told us to go to the hospital at twelve that day. So we just drove straight there. It's about twenty minutes away. And then we saw one of the specialist doctors. We saw a midwife specialist, as they call her. She was absolutely wonderful. She was a lovely woman, and so good at her job.

And she sat us down and explained about, you know, 'Do you want some literature about Down's syndrome?' And she went through everything that, as I say, the problems, that they can have. And it points out that because of our age, you know, they can live a long time now and who'd look after them when you're gone? You know, that sort of thing. And that's when she gave us the ARC leaflet which gave, you know, the booklet, and it just explained step by step what would be involved if I did go and have the termination and everything. It was very good.

So you sat down and read that before you decided?

Yes. We sat in this room and we read through these. I think they sent us down to have a cup of coffee for half an hour or something like that. But it, I know they didn't force me into doing anything that day, but I think by then I just thought, 'I've just got to, you know, we've got to do it as soon as possible, really. The longer it goes on, you know, the more chance I'm going to be feeling things.'

I suppose really maybe they should go into it in more detail, either when you have your first visit from the midwife - even though, again, they probably think it isn't particularly their job - but maybe they should have some leaflets. I mean they do give you leaflets on various things, but I don't remember there being one about that.

Are you thinking about information about Down's or information about ARC?

Yeah, well, any. Either really. But, you know, they just tell you about the blood test and what it detects, you know, what they're looking for with that, but they don't really go into any great detail. So I mean, yeah, I think maybe we should have had more time and more information, before we got to, you know - because we were sat in this room looking at these booklets, and they were sort of in the other room like waiting, 'Well, you know, are you going to take the tablet or not?' you know. And it was that quick. We should have had more time, yeah.

Yeah. It wouldn't have changed your mind - or would it?

I don't think so, in the long run. I don't think it would have. But looking back you do feel that you didn't - you feel guilty, basically, because you don't, you know, it looks like you can't - not that you can't care less, obviously, but it does look like you've sort of made that snap decision, 'Oh yes, we're going to do that', you know, and without thinking about it properly, thinking it all through, because it was in such a short space of time. 

And a lot of people have said, you know, 'It was very quick that, wasn't it?' But you see, because obviously I'd never been through this thing before, I just thought that that's how, you know, how it worked, that they do do it as soon as possible, and, you know.

So going home over the weekend and reading through in more detail might have been preferable?

It may, it might have. As I say, I don't think it would have changed our minds but it would have maybe prepared us a bit more, or made us stick to our decision maybe, you know, more. I mean, I know we did anyway, but it would have given us more, sort of thing, towards, you know, being mor

And we had spent hours over the weekend and on Monday, and also on Tuesday morning, deciding what we were going to do, and then testing each other's resolve on what we'd decided to do, and then questioning what everybody would think of us if we did this thing or this thing, and how we would feel once we'd made that decision and how we would live with ourselves making that decision.  

And we decided that we'd end the pregnancy because we couldn't put the three of us through the suffering of potentially him dying during pregnancy or him dying during labour or him living for two days in absolute agony. Because there's nothing they could do. They couldn't, it's not like they could operate on him, because he was so wrong. There wasn't really anything that was right with him.

And I remember, actually, they hadn't told us that it was a little boy, and I'd asked on the telephone when they gave me the results if they knew what sex it was and she said, 'Oh, I've not looked at that.' And I wish they'd told me. I wish they had thought that that was important to tell me whether he was a little boy or a little girl.

So you only found out afterwards?

No, we found, we actually found out on the Tuesday afternoon. I asked, I said, 'You know, you've got to tell me' and he went off and got the piece of paper back from the clinic that said that it was a little boy. And then, he talked us through sort of the process of termination and we'd said that that's what we'd agreed to do. And he said, 'Well, take some more time to think about it, and contact me tomorrow and let me know.'  

So we went away and we spent another day deliberating and crying and reading, and trying to think of an easy way out, but there wasn't one at all. And then we went back on, then we phoned him on the Wednesday to confirm that that's what we wanted to do. And, at the time we, time moved so slowly. I just remember thinking that hours just passed like days and I just wanted it all to be over.  

And I remember them saying to me, 'You know, you need time to think about it'. And in hindsight, the time that they gave us was so precious because in that week that we knew he was a little boy and we had actually a wonderful week with him. It was quite incredible. 

We went to see our wedding photographer who took photographs of me pregnant and I have no idea how we managed to look so happy, but we did. And we went out, and we went to places with him that, you know, special places to us, and it was amazing.
 

It was difficult, but you dust yourself off, you go home, you read up your books, you read the Internet, you know. And it's great because there is so much information out there. And you know, I think about if my parents had gone through something like this, you know, where would they get the information from? 

I mean we're talking about thirty plus years ago. Where would they get that information from? You know, they'd have to rely on the doctors. And we're very lucky now that, you know, all of that information is literally at your finger tips, and we were able to read out - and I think you're able to then make informed choices. 

Because you know, 'Ignorance is bliss' people say, but I just, you know, I think if you know, about what, you know, what's potentially happening to you, you're better placed to be able to make the decisions that are going to, you know, maybe affect the rest of your life.

Were there any points where you felt you needed more information that you didn't get at the right times?

I don't think so. I mean we, because we were going up to London quite a lot we were able to read up about things and ask the relevant questions to the doctors. So they were able to give us a good opinion at those particular junctures when we were having those scans, because we had the information at our finger tips.  

You know, I don't think, I mean I think the doctors were, if you ask them straight questions they'll give you straight answers, you know. There's nothing to be gained for them, or for us, by them hiding information from you and being soft on you. And we knew from very early on what we were dealing with - as you say, from Down's to chromosomal defects to heart disorder. 

We knew, and we read up about everything so we were able to go in and ask those questions. And I think if you're honest and straight with doctors they do, I mean our experience certainly shows that they were, they're very responsive and they will give you straight answers.
 

Yeah, so went, stumbled into bed and, you know, kind of fell asleep crying in each other's arms, and then I think I woke up about three in the morning and said, 'I can't sleep', you know, obviously because you think it's all a dream. You wake up and you think, 'Oh, no it's not'. There's like a split second where you think it's all a horrible dream and then you wake up and go, 'No, it's not. It's real'. 

And well, I said, 'I've got to go downstairs and look at my pregnancy books I'd got and see if there's anything about anencephaly in there'. I got my nursing, the Bailliere's nursing dictionary which has like all the, you know, the terms and everything in it, stumbling across it and couldn't find anything in there that, you know, the breakdown of what it meant. 

I suppose because you're just fumbling in the dark really, and being quite tired as well, that you're not really concentrating on what you're doing. And I didn't have the actual proper spelling in front of me. I was just looking at what I thought it was spelt like so, you know, I was kind of not looking for the proper thing. 

And then looking through the pregnancy books, there wasn't anything, wasn't anything in there about, you know, our condition that we had. There was spina bifida, Down's syndrome, all congenital heart problems, all the different things that, you know, are obvious things that can go wrong in your pregnancy, but nothing that related to ours. 

And then felt 'Oh, I'll look in the back and see if there's any contact numbers that, of people, perhaps that, can help, put some perspective on what was going on'. Nothing kind of sprang out immediately that meant any relevance to me at all or our condition. There was like the Miscarriage Society and Stillborn Society and all of these things were, 'Oh, no, that's nothing to do with us'. 

And then obviously the one that did spring out was Antenatal Results and Choices and, but they weren't open I think until about 9 or 10 in the morning, the next morning. So knowing that I had this number, it made us feel a bit better about, you know, because it meant that we could talk to someone and felt that, it was a bit of weight lifted off your chest so you could kind of, it felt, 'Oh, at least I can go back to bed' knowing that, 'Okay, I have to wait until 9, 10 in the morning when they're open' but it meant that, you know, you kind of, you had, there was a bit of light at the end of the tunnel that someone might be able to explain a bit better what was going on.
 

We went in there, obviously with a whole sheet of questions to ask him, but we'd actually had a lot of those questions answered anyway by all the people we'd talked to. So we basically went in there with a decision to terminate the pregnancy, and what it would involve and where we'd go from there. 

We had actually received the information through from the ARC [Antenatal results and Choices] and ASBAH [Association for Spina Bifida and Hydrocephalus] as well, so we had that and we briefly kind of read over it quickly before we had to go to the hospital. 

And obviously we also were a bit, because obviously the way we'd had it explained to us at the hospital we had a bit of a complaint to make to the consultant as well, saying that, 'You kind of sent us home with no information at all and that was wrong. 

Because how come, with our own brains I suppose have gone home, looked in the back of a book, got a number out of the back of a book, rung these people up and they have sent us all this information and this is all the information we've got and you couldn't give us anything? And do you not think that you should have this information to hand for, for people, you know, who, who have possibly gone through, going through it or have gone through it?'

And they, I think the consultant was quite shocked. He didn't realise that we had gone home - even though he was sitting in the same room as the midwife when she was writing it down on a bit of paper - he didn't realise that we hadn't, you know, we'd gone home with just this name and that was it. And because then we turned round and said that we were deciding to have the termination, they then brought out the Antenatal Results and Choices termination book, which we'd already got. 

But you think, 'Well, that could have been'' It's exactly what they said at the ARC'  'We will send this to you. We know that you don't want to make this decision because we know the decision that you are making is to go full term with your baby, but it's just an option that can be explained to you, and that you can read it and take it in your own context and it's just, it's still open as an option'.
 

Had either of you had any previous contact with Down's syndrome?

Father'  I'm adopted. I've got a cousin who lives up in [town], I think it is, who's got Down's syndrome, so I've only seen him once or twice. So I knew a little bit about it - not much, but I'd obviously seen him and stayed the weekend with him before.

Do you think that had affected your reaction?

Father'  Not really, no. As I say sort of probably twice I've seen him.

Mother'  But you've had more contact with disabilities than I have, from your boarding school days as well.

What kind of contact with disabilities had that been? 

Father'  Cerebral palsy, I think, one or two of the lads had up there. Other disabilities I can't really say sort of, I wouldn't really know sort of what they had.

Mother' Not a disability, but sort of conditions. You were on a farm, adopted onto, or fostered onto a farm with a chap with cystic fibrosis as well, weren't you? So having to go through the treatment every day.

Do you think any of that was consciously going through your head or subconsciously?

Father'  I don't know if it was subconsciously or not, but I've never really sort of been one of these that looks at people and sort of just categorises them. I sort of just take them as they are, and as they come. So I don't think I've really sort of thought about it.

And had you had any?

Mother' No, not at all. I mean the only contact I've really had with disabilities was at school, when sort of once every couple of months you would have, you know, a special needs group come into your school and you interacted with each other. And that was it. 

So, yeah. We've actually been up to where [husband], to the house master that used to look after [husband] at boarding school. And he now looks after adults with different disabilities, with Trisomy 20, and another lady that has no control over, she has no communication and she has no control over her muscles, so she'll go to touch you and she'll push you out of the way. And I was absolutely petrified, and you just got on with it. You were quite happy to be sort of walking her round the garden and...

Father'  I think she was walking me round the garden.

And this was after [son] was born?

Mother' No, whilst I was pregnant. We went off to go and meet an awful lot of people that had been through different pregnancies, heart surgery, different disabilities, just to make sure that we knew what we were doing, to help with the decision making.
 

I had met children with Down's syndrome through my work, in that I was a public sector auditor, so it was my responsibility to go round certain authorities and looking at how they spent public money. And one of the things that we looked at was how they spent money on special schools versus supporting children with special needs in ordinary state schools.

So I had met children with Down's syndrome and I explained that to her, and yes, I was frightened by her response. She said “Did you know that Down's syndrome is a very long spectrum, and if you've met children in special schools they're likely to be at the very mild end of the spectrum, and you won't have met children with Down's syndrome at the very severe end of the spectrum, because they would never get to school.”* And it, those words were the words that I was haunted by, I guess, as I went through the decision process.

Severity had been one of the things that you had talked about together beforehand. And did anybody sort of ever say well this is how we could find out about the extent of ?

No, they told me it was impossible to find out. And to be honest the two ends of the spectrum worried me and my husband. We worried about having a child with very severe Down's syndrome, who would perhaps die shortly after birth. And we worried about having a child with very mild Down's syndrome who would perhaps out-survive us by many years. Yeah, so it was those two extremes that concerned us and we didn't, we didn't resolve that, really. No-one was able to, we were told it was impossible to know which end of the spectrum the baby was.

You've got sort of two groups of information. I mean, the first set that you identified was about the process at the termination, and getting information about that. And then there's information about Down's syndrome as a condition and what it would be like to live with. I mean, thinking about those two groups, do you feel that you got sufficient answers beforehand? What else would have helped?

I think perhaps we did make the decision too quickly. And I think I would probably now feel more at ease with the decision that we made had I perhaps spoken to people who were able to tell me more about the condition and what it would involve for us as a family. I don't think I really investigated enough. I didn't push enough for the information. I was just so terrified, firstly by the prospect of living with a child at either end of the spectrum, and secondly by the prospect of having to have a termination and go through labour.

* It is now more common that Down's syndrome children at the mild end of the spectrum are educated in main stream schools. Whereas those with more difficulties are educated in special schools.