Interview 35

Age at interview: 38

Brief Outline: Father of 1 child. 2nd pregnancy' wife felt unwell throughout pregnancy. Nuchal scan at 12-weeks arranged privately, advised to have CVS - no problems detected. 20-week scan found baby had heart problems. Specialist cardiac scan confirmed baby had multiple problems in heart, stomach and spleen. Pregnancy ended by feticide and induction at 22 weeks. Post mortem confirmed multiple abnormalities. He is undecided about whether he wants another baby.

Background: Pregnancy ended in 2003. No. of children at time of interview' 1 + [1]. Age of other child' 3. Occupations' Father - business analyst, Mother - training and development. Marital status' married. Ethnic background' White British.

He did not expect to find out at the 20-week scan that there was anything wrong with the baby ...

So carried on with the plans, and, you know, planning for the, another baby to come along and then we went for a 20- week scan which is obviously the big one and very exciting, seeing all the arms and legs and once again everything was going fine, 'Look here's the baby, here's the length of baby'.  

And the doctor - because it was a doctor rather then just the, a sonographer or whatever the correct term is - was scanning my wife, and she hovered over the heart of the baby and said, 'Oh there's the heart, we'll come back to that'. And as soon as she said those words, both of us were like, 'Well what's wrong?'. Because we knew that that wasn't normal, that wasn't what we'd experienced before, it wasn't just the, 'There's the arm, there's the leg, oh look the baby's moving'. It was, 'Oh we'll come back to that'.    

And it turned out the baby's heart wasn't forming properly, the chambers weren't forming properly. So once again we were right back down, really no, really not knowing what to expect. So we'd gone through the Down's syndrome or worse scare, we'd had conversations about what we would do, if it was confirmed that it was Down's syndrome or another syndrome, another sort of chromosome abnormality. We'd sort of put those discussions to the back of our mind, and then all of a sudden there are other abnormalities so yeah it was a bit a bit of a shocker [laughs].

I think that's an understatement.

Yeah, yeah. And it was then because we were at 20 weeks by this point, there was only fairly short window to actually, to get some more tests done, find out what the problems were, and then make any decisions that might have to be made. 

And at that point I don't think we, I don't think we realised that there might have to be a decision, because we'd talked about it with, with Down's and the other possible problems, but at this point it was, well okay what can be done to fix the problem - because yes the heart's not developing properly but there must be something we can do. 

He and his partner appreciated the consultant being direct and open with them about the baby's...

So I mean obviously [sighs] we were both very upset, and in a certain amount of shock, but trying to, trying to take on what they were, what they were telling us. And I think because of the work that both of us have done in the past, it's quite analytical the work, and the what we, we both said it since, we both reverted to being analysts. It was like - give us the information, give us as much information as you can and then we'll analyse that and, and then we'll...- so we sort of almost tried to detach ourselves from it. 

So the specialist we spoke to he said, 'Well so you, I'm going to give it to you straight'. And I said, 'Well that's all you can do because, there's no point in trying to dress it up, just give us the information, give it, what you think'. So he gave us the, the prognosis for our baby girl -because we'd found out that she was a girl by then - and the, you know, it was a very strong possibility, or very strong likelihood that she would make it through to the end of the pregnancy. So all the time she was inside then it was fine.

And then it started to get into 'Well assuming she survives the birth, then she will need an operation very quickly to try and repair some of the damage or some of the abnormalities. And assuming she make it through that first operation, then within the next 6 months or so she will need another operation, and assuming she makes it through that...' and it just when on from there. 

And they said it's very likely that she will spend the first X amount of time of her life in and out of hospital if not in hospital, and assuming she gets through all of that, then by the time she's in her teenage years she will need a heart transplant. 

So [sighs] that's the information we were given, now they, they said, 'Do you want some time to talk about it?'. And yes, yes we did, so we, we went along to one of those rooms that you see on Casualty, you know, the [laughs]...

Sad rooms?

Yeah we're in the, 'Lets take you in here, do you want a cup of coffee? Do you want this? Do you want that?'. And I think before we even talked, both of us knew what our decision was going to be, because, we didn't want to inflict that on her, or us, or our little boy. 

He felt helpless as there was nothing he could do to help his wife as she gave birth.

It was explained to us that we would go down to where they were doing the, doing scans, so where they did scans - so we'd go down there and that's where there would be an injection into the baby. And also my wife would have an injection that would start things off.  

And that was hard in itself the fact you were going on the same place you've had the scans, the same place you've been where you've been really happy in the past. And, and also sitting alongside people who are there who are pregnant, knowing that you're having to terminate the pregnancy, knowing that you're going to have to go through giving birth with it, there not being a happy ending.  

So went down and the injections were given. And then we went back to up the room. And once, once things started I mean my wife was hooked up to or whatever drugs it was - one of those things where she could just give herself a boost of drugs - so she was, she was pretty much out of it for a lot of the time, sort of almost falling asleep. And that's when I felt most helpless I think, because there was nothing I could do - nothing at all apart from just be there - and no, not even talking to her because she wasn't really talking that much anyway because of the drugs.  

But yeah not, just not knowing when really, not knowing how long it was going to take yeah. And not, and with our little boy being born by Caesarean, not really knowing what to expect anyway, because we, [wife] hadn't been through a natural pregnancy before so it was all a new experience, and it should have been a really joyful experience, but it was knowing that the baby that was coming out wasn't going to be coming home with us. 

He and his wife didn't mind seeing their baby wrapped up in a shawl but thought it was...

I mean another thing that neither of us particularly liked were some of the photos that were taken, dressing her up in a little pink dress... its... because, for a start there's no way we would've put her in a dress like that anyway, and [sighs] she wasn't born alive, she wasn't, it didn't matter, yeah, fine, have a photo of her wrapped up in a little blanket which is, which is how we held her. But don't, don't pretend that she's something she's not. 

So yeah, I mean we look at the photos every now and then, and I don't like looking at the one of her dressed up, you know, I didn't think that was right, it's not what I would do. 

Did anybody ask you if you wanted her to be dressed?

No, no-one asked us if we wanted her to be dressed. Thinking, thinking about it one of the midwives said, 'We're going to take a photo, we'll put a nice little hat on her and'. And but it just didn't register at the time, didn't register that that's actually what was going to happen.

Describes going to fetch his other child the day after the termination and how he realised that...

We stayed overnight in hospital, you know, lovely bed with nice rubber sheets, so we didn't get much of a sleep anyway on a nice hot night like it was. We stayed overnight, our little boy was with my wife's parents, and the following day once we'd signed whatever needed to be signed, and given permission for the post mortem and it had been explained to us that if we wanted a funeral we could, and where the crematorium or the cemetery that the hospital used was... this one and we could go and have a look at it or whatever. 

So we came home, we went round to my in-laws to pick our little boy up. Which was... I was emotional enough as it was, I mean just to walk in and just try not to be upset because he would wonder why we were upset, but kids aren't stupid are they? He knew something was up, even at the age he was so.  

Yeah, and then just sort of try and get on with life. But [sighs] it's very difficult to, knowing that there wasn't a baby inside my wife anymore, and her tummy wasn't big anymore, she couldn't feel the baby moving anymore, there wasn't going to be a happy ending in another, another 18 weeks or whatever.  

And then you know you try and get on with normal life, and come into contact with people who, who know or knew that she'd been pregnant the last time they saw her, and now she's not pregnant, and it's answering all the questions that might come up then. 

So I think I phoned a few of our closest friends just to let them know what had gone on. Just to let them know that we'd lost the baby. And I think the grapevine starts working a little bit, and people start to hear that's what happened. And from a personal point of view, what I didn't want to happen was for the house to become full of flowers. So everyone I was speaking to I was saying, 'If you want to, by all means send a card if you, if that's what you're going to do, but don't send flowers, don't'. 

Describes how he responds when people ask him questions about his family.

I'm sure sometimes other people are more uncomfortable than me. The classic is, you meet someone for the first time through work, through whatever, and they see you've got a little boy, 'Are you planning anymore?'. And it's a question that, that you ask, we don't, we as a couple now don't ever ask that question. If people want to tell us that they might be planning more or, or not, or whatever then we'll let them tell us but we don't ever ask because you don't know the situation or. 

What do you say if they ask you that?

When they ask if we're having any more? I'm like, my initial reaction is normally, 'That's a difficult one'. To which they'll ask, 'Why?'. And I say, 'Well we lost a baby, x months ago'. And the usual response to that is, 'Oh well you never know what might happen'. To which I say, 'Well [laughs] it's not as simple as that because our little boy is an IVF baby, and yeah, it's not as simple as that'. Which normally shuts people up [laughs].

No, I mean when people, people then will, will apologise and they'll say, 'Oh sorry'. 'Well what are you saying sorry for? Because you didn't know'.  

Describes how he and his wife felt extremely sad for some time after the termination and that his...

I don't think either of us were prepared for feeling so sad for such a extended period of time. And here we are sort of 18 months on from the, from the termination, and those feelings are still there, it's just that you have a longer period of time between each time when you feel, well... when you do just burst into tears. And that's not just, that's not just my wife that's me was well. 

Sometimes you think it's just not fair. I've become more emotional, I think I've become more emotional, more... I get upset, I get more emotional easier than before. And that is not just getting upset, but if I'm really happy then I'll remember that, you know, yeah I am really happy and that, you know, life is still good and I'll, you know, I feel myself welling-up then. 

I think the whole experience has made us realise that, that life's too short to worry about a lot of things, and it's changed our outlook I think to certain things. 

His wife's experience of ARC's email forum has been very positive but he found it more helpful to go to a meeting for ARC members and hear other parents' experiences.

What has happened is [my wife] joined the ARC (Antenatal Results and Choices) forum on through the internet. And I joined the men's forum as well, there's a men's forum, which is so under-used it's, it's not true - I think it's bloke thing [laughs] - we don't like to talk about it as much.  

But I know my wife has found the forum to be very, very useful, and she's met there, there's, there's one other woman particularly she's met has become good friends with. And there are other people that she's become friends with, not quite so good friends with but friends with, because they can understand what she's gone through, what we've through. 

And the, the parents meeting we went to in [city] with ARC was very useful for both of us just to sit there and talk to other people who've gone through very similar or the same situation, and to understand that we're not going mad, and to understand that everything we're feeling emotionally is normal. Because you do start to doubt whether or not you're normal, you do start to doubt you, your sanity because, you know, 'Why am I? It's so many months down the line, why am I still feeling like this?'.

He doesn't feel strong enough to go through another set of IVF and another pregnancy and is...

No the experience we've been through has affected me as regards, do I want any more children a lot more than it's affected my wife, because I know for a fact that she would love to have another baby. And I'm still not a hundred percent sure that I'm strong enough to go through either another set of IVF and all that's involved in that, or another pregnancy, not knowing whether or not that's going to turn out alright. 

I don't think or I couldn't go through another termination - that's how I feel at the moment. So there's a big part of me at the moment that's says, 'we've got our little boy, we never thought we were going to him in the first place so, let's be thankful for that'. But [laughs] he's so good with other kids, it's almost, you know, if we, if that's the decision we make are we depriving him of a little brother or sister that he would love to bits? Depriving him of a playmate, I don't know, I don't know.

There's a bit question mark there.

There is a big question there. Because if I knew that [my wife] could get pregnant tomorrow, and that we would go through the pregnancy with no problems whatsoever then I'd say, 'Yes.'

He tried to support his wife in all kinds of ways and realised the most difficult thing was...

I think the right thing to do for whatever person, it's going to depend on the woman anyway and how they're dealing with what's happening to them and to the couple and the extended family.  

My wife found it very, very useful writing down everything in her, on the computer - I'd find her tapping away at the computer, I'm like, 'What are you doing?'. 'I'm just updating my diary'. So she literally wrote a diary of the pregnancy.  

What I found useful and what I also found very upsetting, was reading what she'd written, because she was able to get down a lot more in a, in a you know, in a file on a computer than she could convey to me without, without breaking down in tears all the time. So that, that document was very, very helpful for me. As I say it was very upsetting as well because she was saying things in there, where I was thinking, 'Well I should have known that', or 'I could have dealt with that better'. So it was, it was upsetting because I, you know, I knew maybe I hadn't been there when she needed me or whatever.  

But just listening a lot of the time, but as couple we were talking about it a lot as well, whilst trying to have a fairly normal family life for our little boy, so it was difficult. I know that I was putting on a very brave face. And once, once we'd gone through the termination, probably, well a few days after that, that's when it all came out for me. I remember sitting here and it just went, that's when I just let go. A probably realised then how much of a brave face I'd been putting on it. 

Do you recommend doing that 'putting on a brave face', is that something you probably have to do to get through it?

You have to put on a brave face to get through some of, you know, you need to get, because life does go on. And as much as the situation we were in was sort of, it never really took over our life, but it, I can see how for some people it might just take over your life completely. But we still had a little boy to look after, we still had friends that wanted to see us, we still had responsibilities at work and responsibilities outside of work, and you've still got to get on with those things, so yeah the, the brave face is necessary. And I think as a man you're more expected to put on that brave face and to be strong and to be there, but sometimes it's bloody difficult, really was.