Interview 26

Age at interview: 39

Brief Outline: Baby diagnosed with diaphragmatic hernia at 20-week scan. Mother decided to continue the pregnancy, knowing the outcome was uncertain. Baby died 10 hours after birth.

Background: Occupation' massage therapist/alternative health consultant. Marital status' single. Ethnic background' White British. Read by an actor.

Even though she knew her baby Oscar might not live, she went to antenatal yoga classes for his...

I still went to pre-natal yoga and stuff, and I was doing all my pregnancy exercises and things.

So did the people at the yoga class know [that the baby might not live]?

No.

Was that hard going to classes?

Well, in a way I had avoided being around other pregnant women because I thought it would be hard, but actually it was nice. But it was, I went for Oscar, really. I thought I would be nice for him. I think I was, I was trying to make his life with me nice, because it wouldn't be that long.  

She looked up diaphragmatic hernia on the internet but was so shocked by the information she...

That night I remember I looked on the internet to look up diaphragmatic hernia and some of it said that there's an eighty percent mortality rate, and I just couldn't take it in, you know...

My boyfriend got the impression that it was just a little operation he'd have to have afterwards, and then be in hospital for a while and then come out.  And once I saw that on the internet I didn't look any further, I just didn't want to know. Because some people go and do loads of research and find out the best hospital and the best surgeons and all that kind of thing. And I just remember being paralysed with shock.

Despite the baby's problems, she wanted to experience a whole pregnancy, in case she never had...

Yeah, nobody [laughs], you just don't get, you know the feeling when you go along for your antenatal check-up and you get excited hearing the baby's heart beat and looking - because I didn't buy anything for him, didn't buy any, any equipment or baby clothes, nothing. So I, I just wanted to be sure he was here first.

You said you bought one thing for him, did you?

A little babygro, which said 'I grow in my sleep' on it.

I didn't, well, I haven't, I haven't felt embittered or anything about that, you know - oh, all that wasted time, or how unfair it is, or anything like that. I haven't really thought about those sorts of things.  I also wanted to continue with the pregnancy because I thought, I don't want to cut this pregnancy short. I want to experience pregnancy to full term. I might not have another chance.. Because I'm thirty-nine now and I never know what's going to happen, do I? So I wanted that experience as well, and I thought it just felt more natural to go through a life cycle and to have a funeral.  Because if you terminate a baby, although you grieve over them it's very private, people don't acknowledge your grief.. the same way that they do, if the baby's been born and died.  

The stress of knowing the baby was so ill strained her relationship with her partner and she lost...

I think men don't understand how invaded you are by a force that you can't control. So it's natural for you to become more anxious and need more reassurance and need more consistency, so when we start wanting to know what you're doing, where you're going, what's happening [laughs], where everything is, you know, it's just that you want reassurance. You're just trying to make everything secure and you're nesting, and I think men don't understand that you're taken over by a hormonal force that's primitive, which is about making your environment safe. So therefore you want to know where your partner is, if they're safe, if they're okay, all those kind of things, and they need to understand that. 

And did the physical side of the relationship just kind of drop off the scale for you or was it still an important issue? For both of you, I suppose?

I found once I found out I was pregnant, oh, that was enough for me. I was like, “Right, I've got my baby, I'm pregnant”, and I sort of lost interest in the physical side. But then once once we found out there was something wrong with Oscar that just completely shut down anything sexual about me at all. 

It, it's like every, everything else, everything about me just disappeared, I was just this Mum carrying a, a sick baby and sort of I suppose I was not wanting to do anything that would disturb him, I suppose. I don't know, I suppose all that, those thoughts just disappeared, really. All, it's like my personality disappeared. I remember after - I mean, this might be something to do with grief - but I remember I forgot what my favourite food was, I forgot what I liked to eat, I forgot what my favourite movie was, I forgot what my favourite pastimes were. And I didn't know what I wanted to wear, I didn't know what I wanted to eat, didn't know where I wanted to go, and I remember I just was numb, to everything. All my favourite music didn't touch me. I normally loved dancing and I just didn't feel the need to, or urge to. I think my, I got subsumed in this experience.

She felt shocked and angry when she was told at the 20-week scan that her baby had a...

The hospital I went to was about seven miles away, so I had to drive there on my own. But I was feeling fantastic, you know. I was so excited to looking forward to the next scan. It hadn't actually occurred to me, it didn't register really that they call it the anomaly, anomaly scan. I just thought it was for another check-up. And I remember going in for my scan and lying down and looking at the screen, and I was just grinning because I was so excited, you know, to see my baby. And there was only myself and the sonographer in the room, and she took a long time, scanning me. She said, “I think I'm going to have to ask you to come back.” And I asked her why. I said, “Oh, can't you see it properly today?” She said, “I can't see your baby's stomach. I think it's up in the chest cavity.” And, God, I remember feeling like someone had just pushed me over a cliff, you know, that sensation of just falling, because you're so shocked. And I said, “Is it something serious?” And she said, “Yeah I think your baby has a diaphragmatic hernia”, which I didn't know what it was. And I felt really angry at her, I just wanted to punch her, you know? 

And I don't know how long I was in the scanning room. It felt like hours, because I - I couldn't move I was so shocked, and everyone in the, in the antenatal clinic must have heard me crying and screaming, because I was so upset. And a midwife came in the room to try and get me to calm down, and I remember she had to try and get me to breathe through my shock, I was so upset. And eventually they managed to get me off the examination couch and take me into another little room, and someone sat with me and brought me a cup of tea with some sugar. 

And then somebody appeared, I didn't know who they were at the time. It transpired they were the diagnosis counsellor. And then they, they said to me, “Where, where's your partner?” And I said, “He's working.” And because he was doing a job out on the road, I wasn't sure whether we'd be able to get in touch with him. So I've no idea how long it took for him to come, and, and all the time part of me was thinking, “Am I overreacting to this?” You know? “Am I - because they've told me there's something wrong with my baby but I don't know to what extent.” And I was wondering whether they were thinking I was just going over the top, because I was so hysterical. 

But I, I, after speaking to the diagnosis counsellor I sort of got the impression that this was a condition that could be repaired and that most babies survived. Because I, I and - or I said, the first thing I said was, “I'm not terminating my baby, so don't even think about telling me to do that.”

She spent the rest of pregnancy expecting that the baby would die, but she felt her partner could...

So needless to say after that I was really, really anxious and, and worried and very neurotic and I, I don't think my partner understood quite how worried I was, what - I don't think he really was able to contemplate what it felt like, to be carrying a baby and knowing that it might die. Because from the minute I found out I was fixated on the funeral. I was, I was convinced there was going to be a funeral. Maybe it was because I was preparing myself for the worst. And he just thought I was being really morbid and not being positive. You know when people say, “You can't think like that. You've got to try and be positive.” And I remember saying to the diagnosis counsellor, “People keep telling me I'm being really morbid.” She said, “No, you're just being realistic.” 

So anyway, my partner and I split up again in November because I just don't think he could begin to even contemplate the worry that was on my mind, and he just couldn't cope with the demands I was making. You know, just to have reassurance all the time and know exactly where he was and what he was doing and all that kind of thing. Because I had to have everything else in my life consistent and predictable, you know, when that one thing was just so unpredictable. 

So I went through the rest of my pregnancy alone, because I couldn't have the stress of dealing with a relationship when I wasn't getting much support or understanding, which was better for me.

What other sources of support did you have? Did you have family or friends who?

I've got a big family here. First of all I decided not to tell my oldest brother and his girlfriend because they were about to have a baby. So we didn't want to worry them… so I only told my Mum and my other brother, and a couple of really close friends. But generally I didn't tell people. I kept it to myself. I just wanted to be treated like a normal pregnant woman, you know? Not have people asking me all the time and everything.

She wanted to be treated like any other pregnant woman but she knew her experience was very...

But I had some really dark moments, you know, where I was so fed up with it all. I remember lying here one Sunday and I had a lot of bad pains, crampy pains and things, and I was thinking, “Oh I'm going to have a miscarriage.” [Laughs] 

And I was half thinking, “Maybe, maybe it would be good if I had a miscarriage, get it all over and done with now. Because I cannot cope with the stress of waiting.” And other times I had these bizarre ideas that I'd starve us both to deal with it. Me and him. Just because I couldn't deal with it any longer, and [crying].

I don't know. I just thought this, this is what my reality of my pregnancy is and I just have to, to deal with it. And I used to hear songs and think, “Oh, we'll have that at the funeral.” And I remember, I remember buying a little outfit for Oscar and I was with a friend in Mothercare and I started crying, and she said, “No you mustn't think like that, you've got to be really positive.” But I knew he'd probably be, be dead when he wore it.

There's a kind of tension, isn't there, between your wanting to be treated like a normal pregnant person, but almost you weren't treating yourself like a normal pregnant person because you knew you couldn't?

You know, and people would, you know - I mean I didn't - you know all the things that people, women normally worry about when they're pregnant, like, you know, how much weight they're putting on, and whether they'll get stretchmarks, and if the birth's going to be diff-, long, and difficult, and painful, and how will they cope with a crying a baby - all those things. I just didn't have the luxury of worrying about those things. 

And you know, I hear women talk about their worries about giving birth and I just think, “Just be happy, you're going to have a baby, it's nothing”, you know? And you, if you want it to be managed so it's easy and pain free you can have it like that.

Did you think much about the birth or could you not begin to engage with that?

Well, I noticed nobody asked me if I wanted to have antenatal lessons.

Several family members came to be with her when the baby was induced. Talking to other women from...

And then they set a date for induction, and I hadn't wanted to be induced, but actually I was quite relieved to know when everything was going to happen, and I guess they wanted to know all the relevant people were going to be around. And I was quite frightened, but actually it was all managed really beautifully. I was looked after really well. Because they all knew what was probably going to happen, so they looked after me, and they let as many people as I want sit with me while I was in my first stage of labour. 

So who came with you?

My partner came with me, because we'd sort of got back together a month before the baby was born, and I knew what would probably happen, anyway. My Mum came with me, my sister flew over from America. Because she, she'd done her own research and she knew Oscar would probably die, and she didn't want to miss meeting him. 

So I was given an epidural right from the start.

Was that their suggestion?

Mine.

Yours, you wanted it?

Well, I'm glad I had it though, because it makes everything much calmer and I didn't feel anything at all. I mean, I can't even remember much of everything, I think I had so much of it, by the time Oscar was born. It all happened exactly as I imagined it, the way he was delivered, and then I wouldn't be able to hold him, and he would go to a resuscitation table, and they, the people in the room - but this is things that women had told me that I'd spoken to who'd gone through it as well. They'd told me what would happen. Nobody told me at the hospital - I don't know - because I didn't ask, they didn't want to venture the information.

Baby Oscar died 10 hours after birth and the family spent time with him to say goodbye. Her...

His heart stop-, I remember her telling us when his heart stopped beating, and he was still in his little crib then. And I just wanted to pick him up. I said, “Get all this stuff out of him, I just want to hold him.”

But even then I wasn't quite, I didn't quite feel like - you know when you haven't had a baby and you hold someone else's baby and you think, "Oh, aren't they lovely?” And, but then you have to give them back. It felt like I didn't have ownership of him, he wasn't mine.

I suppose I hadn't let myself, I'd trained myself that that was going to happen, that I was going to have to give him away. I'd thought about it so much, it all happened as I expected. And then they put us in a little room while they made this other room upstairs ready. 

And they must have a special nurse who takes care of all this kind of thing, because we had this lovely Irish nurse that looked after us all, you know. We were all given copious cups of tea and, he, I was allowed to hold Oscar and take him in this room, and everyone had a hug with him, everyone nursed him, my brother had brought his harmonica with him and played some tunes, and we had some children's books and we read him a story. And my partner was in such a state he just ran out of the hospital and disappeared for a while, and we found him in the pub, in a state, with all the polaroids scattered round him.

And we were waiting for him to come back so we could give Oscar a bath, and change his clothes and stuff. And initially they given us some clothes to put on him and they weren't, they weren't very nice, hospital clothes, and I'd got some of my own to put him in. So I don't know how long it was before we went upstairs to another room.

So we had our own room with a bed and bathroom and TV and everything. And we had, I spent the night with Oscar and the next day, and I kept saying, they kept saying to me, “Yes, you can keep him as long as you want.” Where really they wanted to take him by the mid-afternoon. And I kept saying, “Do I have to give him up yet?” And they said, “No.” But it was, it was nice, because I've got something to, to remember. If they'd have not let me see him and taken him away I'd have nothing to remember. Because I remember that twenty-four hours very fondly.

Physical and emotional recovery were difficult, and she needed antidepressants to help her get...

And then I remember, I said to the diagnosis counsellor, “I really feel like I'm falling apart.” I wasn't eating, I wasn't sleeping, I just felt absolutely crazy, and she referred me to the psychiatrist, who does have a special interest in baby loss. And she said, “We don't normally prescribe antidepressants to people when they're grieving.” But she said, “Given your past history with depression, I think it'd be a good idea for you to have some, so you don't go into a depression.” So she gave me some new antidepressants on the market, and they worked for about eight weeks and then they didn't work any more because they're not strong enough. So I've doubled the dose two weeks ago and they worked within about three days. So I am feeling really good at the moment.

I also draw on anything I can think of, so I have a homeopath, and I went into hospital with all my homeopathic remedies for grief, in preparation for it all. And also that's helped with the physical recovery as well, because what I found really disturbing was the pain and muscular discomfort you get after you've had a baby, you know, when everything is just really setting itself back to normal. It just reminded me of the baby. So I remember I walked into the doctor's surgery one day and I said, “I need to see a doctor.” And I started crying and she said, “Okay, we'll get you seeing someone now.” And I saw someone I'd never seen before, and he was lovely. He gave me some strong painkillers, just to help me forget for a while, and they referred me to some, for some physiotherapy as well to get me strong. They referred me, gave me whatever I wanted, really.

But, and I, I'm really into alternative therapies as well, so whatever I think will help me I'll do it. And I, I'm really into getting fit, and I think that's one of things that's helped me get better, is forcing myself to get fit again. Just to get out of the house and go to the gym and get some endorphins going. And I, I did a sponsored run on Sunday so I'm, my fitness levels are back again, but I think [pause] if I would advise other people if they could do that, to do something like that, because it really helps just to focus on something like that.