Interview AN35

Age at interview: 34

Brief Outline:

Combined nuchal scan/blood test suggested high chance of the baby having a condition; early results ruled out trisomies but subsequently diagnosed a severe form of Turner's syndrome. Couple decided to end the pregnancy; now pregnant again.

Background:

Children' First pregnancy ended at 17 weeks, Occupation' Mother - opera singer, Father (age 42 at interview)- chartered surveyor, Marital status' Married.

At the 20-week scan in her current pregnancy, the sonographer explained she would be silent, but...

The woman was good in a sense. She said 'I just want you to know this is a check for, you know, all the major organs and so I'm going to be quiet for a while as I scan the baby and check everything'. And I said, 'Thank you for telling me that'.  

Because if she would have been quiet and not warned me I would have thought something was wrong. But as it was she did take too long before she said something, and the tears started falling from my eyes because I thought, 'It's going wrong'.

I'm a constant feedback person. I would have appreciated, 'Yep, spine's all okay; no spina bifida, okay; brain lobes are there; no hydrocephalus'. 'And we've got, there's the kidneys, and there's the stomach', you know. 

She did do that afterwards and, because I said, 'Show me the spine' and I'm looking and, 'Show me this'.  And she said, 'See, here's the stomach. Do you see that dark circle? That's, she's swallowed fluid'. And then we actually saw her - we think it's a girl -we saw her swallow fluid, and I thought, 'Oh, that's good'.

She had the combined blood test and nuchal scan in her first pregnancy. It was the blood test...

We were trying for about four months. And became pregnant. But then I had a lot of problems. I bled for thirty days, so we had tons of scans to check for miscarriage but it had all stopped by the time we went for our 12 week scan and - which was our second wedding anniversary. 

And so they did the non-invasive tests, which at our hospital is nuchal fold, age ratio and a blood test to give you a combined risk for trisomy 21, 13 and 18. And our testing came out a 1 in 32 chance for Down's syndrome - that's what it flagged under. The blood test alone at our hospital said 1 in 6. So they recommend anything under 300, 1 in 300, that you go on for a CVS.

And with Turner's syndrome it usually, the physical symptoms start in the second trimester, because that's when the oestrogen is needed. And if you're missing your second sex chromosome you don't have any oestrogen, and that's when things start going wrong. And swelling and cystic hygromas, fetal hydrops, heart problems, all of those things show up later.  

We feel actually fortunate that our hospital was able to pick up so early, because the nuchal fold came out fine. A lot of times actually with Turner's syndrome it will show a raised level of nuchal fold, but it was our blood test that actually flagged it.

They worried about the risk of miscarriage but decided to have CVS (Chorionic Villus Sampling) in...

Father' One of the elements that went through our minds was with CVS there is a risk of miscarriage.

Mother' Yeah.

Father' Which is, is it 1 in 100?

Mother' Yeah. They say 1 in 100.

Father' There's a 1 in 100 risk of miscarriage, albeit that's the nationwide statistic. And although they don't publish it, the impression we get is that the hospital we went to, probably because of the people who are involved there, actually had sort of a better risk analysis, if you like --

Mother' Yes.

Father' Of not having miscarriages and so on.

Mother' Our consultant explained to us that it's a national average, and they group in doctors that do it once a year to doctors that do twenty a day. And where we went they're doing them all day. And he said, “Really, you know, we can't publish the actual risks, because we have to go off of a national average”  

But he said, he mentioned that he does a certain procedure, that it's a 1 in 100 risk, but he said his actual risk is 1 in 4000. So that reassured us. But we were terrified that we would miscarry a healthy baby by having this invasive test.

And we were frightened, but the odds were so poor that we thought, “Oh, we're going to have to risk it”. The risk obviously was worse for an abnormality than it was for the miscarriage.

Father' And that's actually an interesting point, because we have another friend of ours, who does have a Down syndrome baby.  And her analysis, her initial screening analysis I think came out at something like 1 in 400, and she made a judgement call at that point not to go on and have CVS or amniocentesis, and has had a Down syndrome baby.  

And so there is a judgement call between, you know, the 1 in 400 risk, where you may take a view on it, down to where we were, which is 1 in 32 on the triple screening, or if you looked at the blood work, of 1 in 6.  

And I think, you know, we didn't have any real doubts about going for it, albeit that, you know, then in the back of your mind there's another element, you have, “Oh, what if we've got a perfectly healthy baby and we lose it because we've gone to do this checking?”  

But it was only a small element in the back of our minds, rather than being a serious doubt about going ahead and getting the CVS.

CVS (Chorionic Villus Sampling) was much more painful than they expected, but it was worth it to...

Father' One thing actually also just to add about the CVS process - which is not to deter people from doing it, because again, you know, we think that, you know, you should have all the facts in front of you. But it was portrayed to some extent as being just a little prick in the stomach, and it was far from that. And again I think people should be aware that it is not just a little discomfort. 

Mother' I mean people have different pain thresholds, but I found it to be extremely painful. I now know it was like having a contraction. I didn't know that because this was our first child, and I hadn't given birth before. And I now know it's a contraction.  

And they can't, they can deaden your stomach but they can't deaden your uterus. And so when the needle goes through there, it's just horrendous, the cramp that you feel. It's, you know, like a knife just going into your stomach. And that was shocking.  

And they also say, 'Whatever you do, don't move'. And I jerked a little bit because it was so invasive, and I thought, and I said, 'Oh, I've moved'. And they're like, 'No, we're almost done, don't worry'. And I thought, 'I've moved, and the needle's going to go into the baby'. You know, I just thought, 'Oh . . .'.  That was, that was bad, wasn't it? 

Father' Yeah, but to, you know, just to reiterate again, it's, it's one of those things that, in spite of that, we think, you know, it's something that people need to, you know, seriously consider and not just shy away from it because of the pain.

Mother' It was over very quickly and I didn't have any complications whatsoever. Because they say you can spot. And after all the spotting I had, I didn't have any after the procedure and they did a brilliant job.

They thought the CVS (Chorionic Villus Sampling) results were negative, but then got another...

Mother' So we went for the CVS, and they called us a week later to say, 'It's not trisomy 13, 18 or 21. And do you want to know the sex?' And I said, 'Yes'. And they said, 'It's a girl, congratulations'. And then she said, 'You won't get a letter to your GP for another two weeks because we have to grow the karyotypes and check for some really rare disorders.' 

And I said, 'Oh, like what?' And she said, 'Oh, I don't know, they're so rare, there are so many.' And she really didn't give it, she should have said, 'Look, you're not out of the woods yet. Because we told everyone then. We thought everything was fine, and we rejoiced.

How did you find out about the Turner's? Did you get another phone call or...?

Mother' Yeah, it was another phone call, and because we'd had the positive phone call, I was cooking dinner at seven at night and, you know, 'Hello.'  'Oh, this is the midwife calling from the hospital'. And I just, my stomach dropped and I knew, because why are they calling me? They're not supposed to be calling me. And then she told me. And you know that feeling you get in your stomach? It's just horrible.

Father' But I don't think there's any good way of telling somebody that sort of information, because if you say, 'Oh, we need to make an emer-, you know, an emergency appointment with you to come in and tell you something' then you're left, you know, dangling then as well.

Mother' I'm glad they told us what it was so that we did have the evening to start to do our own research before we had to speak to the consultant.

In making their heartbreaking decision to end the pregnancy at 17 weeks, they wanted to do what...

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 she'll be born alive, and if she is born alive she's 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.

They would have preferred the baby to die before the termination, and at first misunderstood the...

Mother' There were good parts and bad parts. They got a lot right. There were some things that were wrong. The person that gave us the tablets, I don't think was equipped to deal with us emotionally. I was under the impression that our baby would be put to sleep somehow, that this, that her heart would be stopped before I was induced.  

And I thought maybe these pills did that, as well as ripen my uterus. And I said, 'Now, this is going to put the baby to sleep, right?' And she just said, 'No'. And I said, 'Well, I was under the impression that's what was going to happen'. And she said, 'No'. And that was it. And I felt, we felt really judged, actually.

Father' I think the other aspect of that was that the lady who'd been dealing with matters for us at the hospital ever since we'd started to realise there was a problem wasn't there that day, and therefore we had a completely different person. And this particular individual was not the midwife who would normally deal with these sort of cases and, as we said, you know --

Mother' The bedside manner...

Father' -- she wasn't equipped to deal with it at all. It was, 'In, take the tablets, see you in a couple of days.'

Mother' 'Take, take your blood pressure, and watch you for an hour and then send you home'. And we needed someone a bit more compassionate. It, yeah  - well, I felt really judged. Which just wasn't helpful, it wasn't useful at that time. Because we'd made our decision and we needed someone to support us in that.

What did the ARC literature say about the tablets?

Mother' It did say that it would ripen your womb. And I had said to the consultant, 'I want my baby to be euthanased before I have her'. And I think he misunderstood me, and I misunderstood him saying, 'It will'. But he may have meant that when you go into labour a 17-week-old cannot tolerate those kind of quick contractions, because when they induce you when you're terminating they just get it going. 

Instead of if, you know, a live baby they have to be very careful about having contractions too quick together. And they don't really worry about that when you're, you know, having a termination. So I think there was just a misunderstanding. I now know that they will give you a shot in the umbilical cord to put the baby to sleep if you're past, I think, 22 to 24 weeks. They do that.  

I think it's 24.

Mother' Yeah. And I wish that I could have had that option, actually, because I'm still haunted by wondering when she passed away. I think I would rather know that she was put to sleep nicely, if that makes any sense.

Father' And then sort of going forward we, you know, the pills were taken on the Monday and then we had 48 hours to wait and --

Mother' With no support.

Father'  -- you know, we, you're just left there.

Mother' You're just sent home.

Father' You know. And you've already started the process. You can't reverse it, and you also can't acce

The father could not face looking at the baby afterwards, but the mother did. The hospital...

Father' The hospital has a chaplain who is sort of multi-denominational, and he talked through with us the various options that we could have for our baby once she'd been delivered. 

And once she was born he did come back again and, you know, initially they'd taken her away but he came back with her in a basket and gave her a blessing. That was a very emotional time. And my wife looked at our baby. I didn't. I couldn't bring myself to do that. It was too upsetting.

Mother'  He has an image of, in his mind, of a little toddler with blue eyes and blonde hair that he likes to keep. And he was at peace with me wanting to see her, and I was at peace with him not wanting to. You know, we both handled it a different way. But I mean he was there, he just didn't - sitting on the bed with me. 

And we anointed her hand with oil, and so I took his finger and - because of course her hand was only as big as the tip of your index finger. And so, yeah, we had a blessing ceremony and a naming ceremony with her. So that, that was nice, wasn't it?

Father' Yeah.

The father felt more certain than the mother that they had done the right thing. Going back to...

And you talked about not realising the kind of impact it would have on you emotionally. And is that something you both feel, that it's...?

Father' Myself probably to a lesser extent in as much as - well, there are various elements, really. One is, although I took time off around the time of the termination - we were off for probably getting on for nearly three weeks at the time - I did go back to work. 

And work, you know, takes in, sucks in your day and occupies your mind and so on, and therefore as I say after the procedure had happened I was back into a, you know, a way of life, sort of thing, [wife]'s work is different in so far as she doesn't work all the time, and as a consequence she had more time to, to dwell.  

And it was also physically her body that had gone through the whole situation. So I think it is different for mothers as opposed to fathers. You know, we grieved together. We cried an awful lot during those weeks and months, but it was different for me. 

And I think I probably also had less doubt about the correctness of our decision. I felt that - perhaps selfishly, I don't know - that it wasn't right to bring somebody into the world with all of these problems. The Turner syndrome has a lot of problems with it in terms of growth hormones and so on. This baby, this child would have had to have injections all of its growing life.  

Every day you have to administer an injection. 

And people will say, 'Well, you know, diabetics have that' and so on. But it was, you know, something like that, and as they get to puberty they wouldn't grow at the same rate as a normal child and they'd get teased, there's behavioural problems. And then there are all the physical problems as, that, you know,  we've talked about in terms of heart problems, I think there's  kidney issues, problems with kidneys as well?

Mother' Horseshoe kidneys.

Father' Yeah, so you know, there were a lot of things there that made me think that it wasn't right to bring her into this world. But I miss her desperately and, you know, we still think about her a lot, you know. She's our first daughter.

Mother' Yeah.

There is much stigma and social disapproval around termination. They want people to understand...

Mother' I'm really open about it, because for one thing I'm at peace with my decision now. I felt a, a bit - I still feel guilt, because I'll never know if I did the right thing. You never know when you make decisions like this if it was the right thing. I know that my decision, our decision, was motivated through love for our child, and just wanting the best for our child and not wanting to see her suffer, and not being the cause of that. 

I felt we're given this information for a reason. And, you know, people say, 'Oh, you shouldn't play God'. And I think to myself, 'Well, actually God made all this testing.' So what am I supposed to do with this information? I think there's a reason why I found out this information and...

Father' But it's not something that we, you know, we don't openly say. You know, people ask us quite a lot at the moment, you know, 'Is this your first child?'. And we, we say, 'No' --

Mother' You say, 'Yes' and I say 'Sort of. It's the first one we've made it this far with'.

Father' Yeah. But you don't then, you don't just blurt out, 'Oh, no, we terminated, you know, a life last year', because a) it makes us feel uncomfortable, and it makes the person asking the question even, feel even more uncomfortable. And because abortion, termination, call it what you want, is still a taboo subject, it's not something that is readily talked about, in spite of the numbers and so on.  

And the distinction between termination for abnormalities and social terminations and all the other issues around abortion, it's not something that you just come out with, really. And so although we've opened up to, you know, obviously our family and close friends and so on, it's not something that, unless someone else has gone through it, that you, you easily talk about.  

It's probably easy to talk about to people who've had miscarriage and stillborn babies because often, you know, their babies have come out like that because of birth defects and so on. It's just that they didn't have to take the decision, they didn't have to make the decision.

Mother' The decision was made for them.

Father' Yeah.

Mother' Yeah.

Father' Whereas, you know, as I say, you know, the clich' - we were playing God, sort of thing.

Mother' Yeah, we made the decision. That's the hardest part. And you know, I think, 'Oh, if I would have only miscarried during those days when my body was trying to do it'. But I'm pretty honest with people, because I've made this decision, I'm going to live with this decision, and I know that people are going to judge me. And people that judge me, I think, 'You're so lucky not to have walked in my shoes and that you're able to judge me. I'm so glad that you can do that, that you have the naivety, because I don't have it any more.'  

And when people say to me, 'Oh, I'm pregnant', I say, 'Oh, well, did you have your 12 week scan?' and 'How did everything come out?'  And pregnancy is, it's not fun. It's not about, 'Is it a boy or a girl?' now. It's, I say, 'Well, does it have 46 chromosomes?' And, so that's a bit, kind of no fun. 

Father' And that's actually another part of, you know, the post-procedure situation is that you still then get bits of information from the system. The system still, you know, if you've registered with, I don't know, Tesco's or Mothercare or whatever, or the actual health authority itself, still certain parts of it still churn out bits of information. My wife's pregnant again. We went to the hospital recently to have a scan and we got through all that touch wood okay, only to find as we were driving back home that they'd given us the pamphlet of information -- 

Mother' For [baby's name].

Father' For our baby [baby's name] that we lost last year. And we went...

Mother' And I'm going back and I'm looking for the results of the scan and, and I was saying, 'What?' I opened it up and I'm seeing results and things from the first pregnancy. And I, then I flipped back to the results of the 12 week scan and sure enough there it says, you know, '1 in 32 chance for an abnormality'. And so I said, 'Turn the car around', because we had the wrong pregnancy folder.

So I walked back in and it was, you know, the receptionist's desk, it was very close quarters, full of women. And I said, 'I'm sorry, you've given me the wrong folder'. She said, 'Oh, is that not you?' I said, 'No, this is me, but this is not the right pregnancy'. And she said, 'I'm sorry? I don't understand'. I said, 'This is my baby that's no longer alive.' And everyone just goes zhoom and looks at me, you know. And then she goes, 'Oh'. I said, 'Check the hospital folder'. And so then she just switched it and she says, 'Here you go. Cheers'. No 'I'm sorry'. Nothing. Nothing. Just --

Did you ever complain about that?

Mother' No.

I mean you must have gone through a kind of split second of thinking, 'Is the same thing happening again?' Or did you realise straight away it wasn't the right one?

Mother' I realised straight away it wasn't the right one. But I just couldn't believe that she didn't then apologise. Because of course when you go to the hospital you have all of your records from any type of pregnancy.

Father' I think part of the issue also is because, you know, we're expecting a child again now, you don't want to upset the apple cart. You just want to sort of, you want to keep all the professionals on side and working--

Mother' We don't want to be, you know, the problem people.

Father' Yeah.

Mother' We don't want them to then not want to see us walk through the door, and not give me that extra little shot of pethidine, you know.