Interview 19

Age at interview: 45

Brief Outline: His wife's 2nd pregnancy' 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy' nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents (see EAP05) carriers of recessive gene. 4th child born in 2004.

Background: Interview with father. Pregnancies ended in 2002 and 2003. No. of children at time of interview' 2 + [2]. Ages of other children' 3, 6 months. Occupation' Father - company director, Mother - NHS manager. Marital status' married. Ethnic background' White

He was very much affected by seeing his baby's face on a 3D scanner and says he can remember her in detail.

Well, at the regional hospital it was a 3-D scan. And that was extraordinary to see the detail that that could offer. In fact, interestingly enough, going sort of. The consultant at the time wasn't really that interested in that imagery.  

It was interesting - well it was fantastic to see this fetus and to see this child that was yours that was horribly ill - but you didn't really get much opportunity to see that because the consultant was more about measurements and all sorts of blood flow and various other screens coming up.  

My wife turned the screen away from her. She didn't want to see the baby. I did. And I'm glad I did and she's glad she didn't. I think at that time she had come to terms better with the fact that this baby was going to be terminated, and I don't think I was quite there. But even if I was there, I still think I would have wanted to see the detail on the scan.    

The thing that I have a very strong memory of is this child's face in amazing detail. I remember thinking, 'Gosh' I now know it was a girl, I didn't know that then, that, 'She looks just like her brother'.

But you could see there was something wrong? Could you tell? I'm trying to understand because I haven't seen a 3-D scan, what it tells the parents?

No, you couldn't see there was anything wrong.

But you could see her face?

You could see her face, and the major aspect that was, that was the indication of what was wrong was the thickening at the back of the neck in this instance, which, when you're looking at a fetus is, you know, sort of half a centimetre thicker or not is completely immaterial to me, and would look like a completely normal neck, but from the point of view of the consultant was severely abnormal.  

Actually you could tell from the brain development as he scanned up through the chambers of the brain, that one quarter of the brain, one chamber was not evident. So I suppose from that aspect, mind you having not been told that or sitting there, I wouldn't have thought necessarily that was odd. But it was very evident. And that was scanning up from the above the head, then you were coming up through the child's head, so you were seeing the chambers in the brain, sort of it was evident in all four chambers of the brain, then suddenly one chamber was empty. 

He describes the tense atmosphere at the 20-week scan and how difficult it was having to wait for more scans before getting a diagnosis.

We'd just spent some time away on a, on a summer holiday and come back expecting to have this scan and be told, 'All fine. Away you go'. My wife had been very, very healthy, more healthy than the first pregnancy, and of course was shattered by the fact that the news, the news was appalling, very serious faces.  

The thing about that which I felt was difficult is that we could tell when being scanned that there was something very seriously wrong. No sort of questions about, 'Do you want to know whether it's a boy or a girl?' or sort of light chat that we'd, we'd experienced before with previous scans. It was just sort of deadpan faces, very serious looks, someone else coming to check. And I wish that I'd been told at that point, that somebody had actually turned round to me and said, 'Look, I'm sorry, but I think there's something very wrong. We don't know, but it's not looking good'. And that was a terrible moment to be sort of hanging on, waiting.  

I know it sounds odd that you want to hear that it's wrong, but you, you know it's wrong, and you, you want to be reassured either that it's okay or is there something seriously wrong. And in this instance the scan was very evident that there was something very seriously wrong.    

And the local hospital wanted to send us off to the regional hospital to actually confirm that, and were not really prepared to say at that time that there was something very seriously wrong. At that point, I got very not upset but quite sort of strongly severe sort of with the people at the hospital saying, 'Look, you know, that's 24 hours, possibly a 48 hours' wait - that's not something that's tenable. We need to have your opinion'. At which point they turned round and said, 'Well, there is something very seriously wrong with the baby, we don't know exactly what, but you do need to have a more in-depth scan at your regional hospital to find out the detail'. So at least then we went to that next stage prepared for the worst really. 
 

He recognises he is being illogical about the injection but he saw it as a 'dreadful intrusion'.

I mean that was a very sort of, it, when you come rationally to it all, I mean you're terminating the pregnancy, you know, and you're using drugs that the mother wouldn't normally have, that would harm the fetus dreadfully anyway. So, you know, rationally it's ridiculous, but it just seemed terribly violent... to have the heart injected. You know, there's a normal, supposedly, it's not normal but, fetus with a heartbeat pumping away, there it is and suddenly there's this dreadful intrusion into this little being that just stops its heart. Whereas I suppose going into a termination where you're sort of induced maybe there's, the trauma is even worse for the fetus. Who knows? 

Did you ever ask the doctors that?

We, no, not the doctors, I talked to the midwife about that, and I seem to remember a sort of quite sensible conversation about, 'Well, we can't possibly know. But, however, you know, they are sort of sleeping, inducing-type drugs, relaxing-type drugs that the mother's taking, and we can only imagine that would have a similar effect on the fetus'. I mean it's horrible, you know... whatever you do and however you do it, it's a very uncomfortable - well that's an understatement - experience so' But, yes, it was better not to have to inject the baby's heart, but when I think about that rationally I can't think why really.

He had been asked to leave before his wife had the injection but he wished he could have remained in the room to comfort her.

I'd liked to have been there for that yeah, because I'd like to have been there for my wife. Even despite the fact that she was heavily drugged, and didn't really know what was going on, I'd like to have been there the moment that she didn't know what was going on. And I think it's like when you wake up from a big dream or something horrible has happened in your life, and you wake up and feel alright then it hits you the moment you get to consciousness, suddenly, bam, there it is. And I'd like to have been there for that moment - and I wasn't. So it would have been better for her and for me if I could have been there. 

Why do you think the consultant sent you out?

I don't know - I suppose because it's a very defining moment, and one that I suppose he wants to protect you from, or she.
 

Naming both the babies was important to his wife but he had his own way of remembering them.

I mean it's a very, it's a very, I feel slightly, not embarrassed, but slightly sort of, it seems a bit of a silly thing to, maybe it just, maybe it was just a way that helped me deal with the grief because I suddenly thought, 'Well, no, this isn't a dead child. This is actually a child that's waiting to be born' and therefore it helped me with the grief. And so maybe it was something I invented to help me move through it.  

However, I do believe our daughter, you know, you hear, you hear the, the expression, 'A very old soul' and I mean she seems to be a very grown-up little baby. So maybe there is something there, it certainly helped me.  

The second time it happened, again my wife gave the little girl a name, and I just don't subscribe to that, it doesn't, doesn't work for me. But we, we live very happily with that. And she refers to them on their birthdays by their names, and it's - sound cold about it - but it just doesn't mean anything to me. It doesn't, the birthdays don't mean anything to me, the, they don't, don't not mean anything to me but they don't, they don't have a huge significance. I really believe that, that person got born. 
 

He found it difficult when a consultant saw his baby on the scanner and described her as 'interesting'.

But what was particularly difficult is another consultant came into the room, looked at the scan, and from his professional point of view, it was interesting. And unfortunately that's what he said, 'Gosh, this is interesting,' which of course is a terrible thing to sort of have to listen to, because two consultants sort of looking at something from their perspective that they've probably not seen, and suddenly there it is, tick the box, from their sort of educational perspective that, yes, there it is, 'Gosh, that's interesting'. And you don't want to hear that. 

And we did actually say to the first consultant when he left the room, the second consultant, that was a bit difficult for us and he apologised and said, 'No, I can understand, I'm sorry'. And he was very good and he then explained in great detail what he felt his diagnosis was, and how, and he handled that very sensitively. 
 

After many sleepless nights he eventually had a dream about his baby which helped him accept her death.

It was, it was summer time, and it was hot and I wasn't sleeping terribly well and thinking about it a lot, and I was waking up a lot. And I do remember waking up very soon after having had a very, very intense dream. And it was a little baby's head that looked just like the head on the scan that I'd seen, a very clear, precise picture. And this child's head, baby's head, came up to mine and put its nose right up against my nose and held on to my ears and it said, or it thought, it transmitted this message, saying, 'Don't worry, Daddy, I'm a soul in waiting'. Which sounds a bit sort of off with the fairies really, and I'm not really like that, I'm a sort of very sort of feet on the ground sort of person, but it gave me great hope because I suddenly woke up and thought, 'Gosh, this isn't a baby that, who's, who I didn't see. This is a baby that has a soul, that's still floating around, and the shell didn't work and this baby's waiting to be born'. 

And has that baby been born?

Yeah, yeah. And that's what, the joyful thing about it. And it was a great way of coping with, for me, with the death of this first baby. 
 

Feels that his role was to help his wife recover properly by making sure she had enough time and space to herself.

Gosh, there's a myriad of things, I mean there are so many things, so many issues that are just huge. You're worried about depression for, for yourself, but for them. You're worried that the, in our instance we had a little boy that needed looking after, you feel nervous that his care is not going to be as good as it should be, or could be. Because there you are as parents, both of you very sombre, very sad, very determined to try and make a baby, so your whole life is taken over by this, you know, need to have a little sibling but, and you forget how to enjoy the first child. 

So you, I was worried for her, from that point of view, and I know that that was an issue for a while, but she did fantastically well. But it is a horrible thing, your body is changing, you're hormonally in a dreadful state, physically you're in a bad state. I suppose I just wanted to sort of put sticking plaster over all the leaks really and try and, I know that my effort with my son went two-fold. I sort of, did sort of step in and really take over a lot more of the day-to-day sort of pastoral care of him, and that sort of gave her a relief I think to sort of regroup and really get her strength back. So I think that's the best thing I could have done for her really, let her know that he was alright.
 

Describes feeling very anxious about the possibility of going through another pregnancy.

Yes, it does, it makes it more intense, because I think you live the fears, you live the anxieties in a very strong way, yeah, in the same way as I think my wife would have done. You're sort of very every day into that, and it's very difficult to stay cheerful when there's potentially some very gloomy news on the horizon. And so, yeah, it's a very, very intense time. I mean unbelievably my wife is talking about having another child. You know, well, you can probably tell just, I mean I'm exhausted by that thought. I mean, you know, we have a child that is healthy, a son, two children that didn't make it, and another child that is healthy. 

The last four years has I think really used a lot of energy, emotionally and physically, more physically from my wife's point of view, because being pregnant that many times in that short space of time must be just exhausting, let alone the emotional devastation that is exhausting as well. So to put yourself in that position again. I think is potentially very dangerous. Not because it, I mean it might work, we might have a very healthy child, but if it doesn't, it's jolly tough.