Interview AN02
More about me...
A friend said she would never have screening to look for problems but had in fact had scans.
A friend said she would never have screening to look for problems but had in fact had scans.
I did have one or two friends who had had children and I therefore wrongly assumed that they would be empathetic and they weren't. I had one or two - one friend in particular, who I remember saying, 'I couldn't do what you did. I couldn't take that decision.' We've, you know, she has three normal, healthy children, so she's never had to make that decision, but she said to me, 'I would never allow myself to have antenatal screening to look for a problem. I've always believed that you should take what God gives you and make the best of it.'
And I was flabbergasted, actually. I was absolutely flabbergasted. And I said, 'Well, did you not have any scans in pregnancy?' And she said, 'Oh yes, I had scans.' And I said, 'Well, that's what I had. I didn't volunteer to have anything different from what anybody else had.'
And I guess at that time I was still justifying to myself the decision I'd made, whereas now I think I'd perhaps be much more assertive, and much more challenging to her assumptions. I've never actually forgiven her for that, and one day I have promised myself I will tell her.
She grew anxious when the sonographer became silent during the nuchal scan, and was upset that the sonographer could not discuss the results.
She grew anxious when the sonographer became silent during the nuchal scan, and was upset that the sonographer could not discuss the results.
We arrived for the scan, and as usual the appointments were running late. So then I was focusing on the fact that I had a very full bladder, and was feeling deeply uncomfortable and wanted to hurry up and get it over and done with, so that I could go to the loo.
The lady who was doing the scan, she wasn't a doctor so she said that she couldn't discuss the scan with us. And so she started the scan and she was very, very quiet. She didn't say anything at all until the end of the scan, and she said, 'I think there may be a problem'.
And we of course asked her what the problem was. She said that she wasn't able to discuss that with us, because she wasn't a doctor, but she would refer us to go and see a doctor who would discuss the results of the scan with us.
Just going back a little bit to this ultrasound technician and when she said she couldn't discuss the results. She did say that before the scan that she wouldn't be able to discuss the results?
She didn't actually. She said it at the point where she went very quiet, where she stopped saying things like, 'And there's the leg, and there's the arm, and there's the head, and there's your baby's tummy'. Then she went very quiet, and it was at that point she said, 'You know I can't discuss the results of the scan with you'.
So you hadn't been kind of, because one option is that yes, staff are quiet during the scan, but if they explain beforehand that's what they are going to do then it's less anxiety creating. But that wasn't your experience?
No. We did realise that there was a problem by the fact that she suddenly became very silent.
And how did you feel about the way that she presented what she thought she'd found at the end to...?
I guess at the time I felt very numb, and almost a little bit cross with her for presenting me with a problem that she couldn't discuss, and because I didn't understand the significance of the probability that she gave me. The fact that it was 1 in 20, I guess I was in denial, and I convinced myself that there wasn't really a problem and why was this lady creating a problem for me?
I was looking at it I guess from a different perspective. And the fact that I'd gone into the scan not really understanding what they were doing, and what they were looking for, and I guess very naively - and I was focusing on the fact that this pregnancy was bound to end successfully, and in a few months' time I would be holding my baby.
And that wasn't her focus. Her focus was that she was there, the purpose of the scan was for her to look for a problem. So she was focusing on the problem and I was focusing on the baby.
It was unpleasant waiting for hours for a repeat nuchal scan and being aware other people waiting were anxious too.
It was unpleasant waiting for hours for a repeat nuchal scan and being aware other people waiting were anxious too.
And what was that experience like when you went to see him?
Can I remember? It was a terribly, terribly hot day and because the hospital was one of the few that specialise in fetal medicine there was an enormous queue of people that built up over the day, and I think we spent a good four or five hours waiting for that appointment in a very dark, sweaty, hot corridor.
Do you know what other people, were other people waiting for...?
There were other people waiting, and I was aware as I was walking down the corridor that doors were opening and closing, and that there were situations of distress happening. I could hear one or two women crying. And yeah, I was aware it wasn't an entirely happy place.
But the other people who were waiting, none of us spoke to each other. We didn't discuss why we were there or our experiences at all.
When she first heard her nuchal scan results, she did not interpret 1 in 20 as a very high chance.
When she first heard her nuchal scan results, she did not interpret 1 in 20 as a very high chance.
My husband is quite a assertive sort, and he pushed her a little bit further than I guess she wanted to go, and she told us that the result of the scan was that we had a probability of the baby having Down's of 1 in 20. So I naively said, 'Oh well that means that 95% sure that the baby, that the baby is fine.'
So I wasn't especially worried. And she said, 'No, no, no, my dear, that's quite high. That is something to worry about'. So we were sent off with our scan report. And in fact we didn't see a doctor. We saw a midwife, who went through the results of the scan with us and explained that 1 in 20 was a very high risk, and that she wanted to refer us up to a specialist hospital where they would carry out further investigations.
She found the CVS (Chorionic Villus Sampling) quick but very painful, and her husband found it very difficult to watch.
She found the CVS (Chorionic Villus Sampling) quick but very painful, and her husband found it very difficult to watch.
So what was the CVS like?
It was awful, from my point of view. He explained to me what the procedure would entail, and I was terribly, terribly worried about causing the miscarriage myself, by moving whilst they were inserting the needle. So I was very tense, and I guess that makes the procedure more painful, more uncomfortable, because I just didn't want to move even a fraction of an inch and cause that needle to touch the baby.
So I can remember I was crying, silently, and just gritting my teeth and clenching my knuckles, and just hoping that everything was going to be OK.
And what did it actually feel like?
Well, they told me that it wasn't painful, but I disagree. I think it is painful. It's not like having an injection, although it seems as if it should be. They insert the needle through your abdomen and collect a sample of the placenta, the tissue around the placenta.
And it felt, what I imagine being stabbed with a sharp implement. It had a sort of, a pressure to it. But it was, the pain only lasted while the needle was actually going through my skin, and then it was just uncomfortable as I was aware of something being inside my abdomen. It only lasted a short time so I don't know, a minute, a minute and a half.
And your husband was with you throughout this?
He was with me.
What was happening to him at this point?
I didn't find out until afterwards how deeply it hurt, affected him, watching this happen. And to some extent I think it almost affected him more than it affected me. I was living through it, and I didn't have much control but I had some control. It was my body. And he almost felt that it was my decision, almost, and he was supporting me in that, and he found it very difficult to watch me go through the procedure, and deal with watching the threat to my baby on the screen. I was focusing on not moving, and he was focusing on the screen and watching the procedure, and watching the needle go in.
When you say that he was sort of, he regarded it as your decision and he was supporting you, do you think he was beginning to think 'Ooh, I'd rather not be doing this actually' or...?
I think it was a head-heart thing. With his head he thought it was the right thing to do, but he found it a very difficult thing to do and to watch. And he found it difficult to balance up his feelings of concern for me and his feelings of concern for the pregnancy.
The midwife rang her at home with the CVS (Chorionic Villus Sampling) results to tell her the baby had Down's syndrome, but she was at work. The midwife was very helpful.
The midwife rang her at home with the CVS (Chorionic Villus Sampling) results to tell her the baby had Down's syndrome, but she was at work. The midwife was very helpful.
They said that the results would take five to seven days. I was working at the time, so I was going into work as usual. And what I hadn't realised was that they didn't want to talk to me at work - that they wanted to talk to me while I was at home - so on the last day, which was a Friday, I told my boss that I was expecting this phone call from the specialists and that I wouldn't be in work.
And in fact they did call that morning with the results. And they said that they'd been trying to call me earlier in the week at home but I'd been at work and they hadn't left a message on the answer machine or anything.
Do you wish in retrospect, I mean had anybody...?
I think - it was a bizarre situation. I was sort of floating through the experience, almost numb and not really thinking about the sort of minor details and the practicalities of things. And I guess it would have been helpful if they hadn't assumed that I was at home. It might have been helpful if somebody had said, 'Are you likely to be at work?'
Did they have your work number?
I don't think they did, in fact. I think they probably just had my home number.
And in between that point and getting the results, did you have further discussions together, or was it all like on hold till you got those results?
Yeah. It was on hold. We talked about the, what we'd been through and we talked about how we felt, but we didn't really go into what we would do with the results.
And then the results came which was another Friday
It was. There was a midwife from the hospital who rang me, and said, 'Unfortunately the results of the CVS show that your baby has Down's syndrome.' And yeah, that was hard because I was by myself, and I was trying to deal with what she had told me, and I was also trying to think about what information I needed from her to help me make the decision.
She was one of the most helpful professionals that I came across throughout the experience. And she did help me to ask the questions. She did ask me what my experience of Down's syndrome was - so had I met any children? She asked me if I had any concerns, and did I need any other information? So she did sort of prompt me. She didn't get off the phone as quickly as possible. Yes, but I was completely devastated.
From her experience of meeting children with Down's syndrome she did not realise the range of disability and health problems it could involve, from mild to severe.
From her experience of meeting children with Down's syndrome she did not realise the range of disability and health problems it could involve, from mild to severe.
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.
It was hard to start discussing whether to end the pregnancy. Their doctor did not appreciate how difficult it was.
It was hard to start discussing whether to end the pregnancy. Their doctor did not appreciate how difficult it was.
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 'We're 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 he'd ever had to deal with parents facing that decision.
She had a surgical termination at just over 14 weeks. She felt no-one treated her sympathetically or recognised her distress on the day it happened.
She had a surgical termination at just over 14 weeks. She felt no-one treated her sympathetically or recognised her distress on the day it happened.
The day of the termination. I think I had had some preconceptions which subsequently turned out to be completely incorrect about what would happen to me on the day of the termination. And I had wrongly assumed that I would be treated as a special case.
So I had wrongly assumed I would be dealt with as an individual, and that this process would be carried out by people who knew the background and who would treat me sympathetically, and that really the experience wouldn't be too bad. But unfortunately that proved not to be the case.
Go on...
So the Wednesday, Wednesday was termination day at the local hospital, so that's what I was waiting for. I wasn't waiting for a particular set of individuals, or the particular set of skills of knowledge, or a support system or anything like that. I was just waiting for the termination clinic.
And you know, I strongly believe that whatever a woman's reasons for termination that she should be supported and I strongly believe in women's rights to choose. So it's not as if I went into that thinking, 'OK, well, I'm justified in going for my termination, whereas all these teenagers here who accidentally got pregnant, they're not entitled to the same level of care and support.
But, I don't know, maybe I do have certain prejudice, prejudices underneath it all, because I did feel insulted almost that I was being treated exactly the same as the teenage girls who were in because they'd accidentally got pregnant and that I got. There were no kind words or anything, no, there was nothing there to suggest that anyone realised just how difficult that day was for me and my husband. And my husband was the only man on the ward.
I remember I was crying on my way into theatre and the theatre nurse said, 'Come on, don't worry. It will all be over soon'. I said 'But I don't want it to be over'. And I just felt completely misunderstood that day.
In her current pregnancy she decided to have CVS (Chorionic Villus Sampling). She found it hard to understand how her risk was calculated this time.
In her current pregnancy she decided to have CVS (Chorionic Villus Sampling). She found it hard to understand how her risk was calculated this time.
I was very apprehensive, because I was aware that not only had I had a previous Down's pregnancy but I am much older and I'm now in a sort of medium to high risk category. So I was very apprehensive. I certainly wasn't looking forward to it. I wasn't even looking forward to seeing a picture of my baby, because I didn't want to, I didn't want to get involved until I'd had, if you like, the all clear.
And we've had the discussion about the fact that you had these three risk factors being fed in and the kind of lack of clarity, really, about what all that meant. What did the risk factors come out at this time?
1 in 60.
Which is still quite high.
And I couldn't, I couldn't really understand where that number came from, so I decided that I would have the CVS. Actually, I disagreed with my husband on this one. He was happy not to have it this time. But I just felt I couldn't take a risk with my family, having already made the decision to terminate a baby with Down syndrome, and now being older and having a son already, I just felt that if we had a Down's baby that it wasn't only going to affect us as a couple, that it was going to affect my son. So I was less prepared to take a chance that the 1 in 60 would be OK then my husband was.
Did you talk much about his reasoning at that point? Why had he changed his views? Was it simply that it was three times less risk, or something?
Yes. And also I think it was to do with the statistics, and the fact that people weren't able to explain to us what the numbers meant, that he just felt the numbers were more spurious, and that if you took out the risk factor - that if you asked them to recalculate taking out the fact that I'd already had a Down's pregnancy, that the probability wasn't much less but it was 1 in 150 or something, and I felt that that still wasn't great.
He was happy to live with 1 in 150, and he just didn't accept that, the 1 in 60. But because I could never get to the bottom of where these numbers had come from I wasn't happy to accept the risk. I don't know, it's just this peculiar situation, but it did come down to the numbers in the end. That he was happy to discount them and I wasn't.
So the 150 or so, I mean, given that you'd been told that it was a 1% increase of risk if you had...?
I couldn't figure how we went from 1 in 150 to 1 in 60, because I'd had this Down's pregnancy. And - oh yes, we were factoring in another thing, which was a blood test. So sorry, there were four factors feeding in and I just couldn't, I just couldn't get to the bottom of all these different, different things and what they meant, so I sort of erred on the - I went, I rang ARC, and I asked them what they thought, and they suggested that I went through the process which was which decision could I live with?
So if I took the decision to have the CVS and had a miscarriage, would I find that an easier decision to live with than, 'OK, I'm not going to have the CVS and I may have a Down's baby.' Yeah, so I decided that I could live with the risk of miscarriage more easily than I could live with the risk, you know, the possible result that we were going to have a Down's baby.