Interview 05

Age at interview: 34

Brief Outline: First child had heart defect detected antenatally and long period of critical illness after birth. Mother had reactive depression in response to his illness. Second child healthy. Mother had postnatal depression related to extreme worry about her health.

Background: Children' 2, aged 2' and 8 months at time of interview. Occupations' Mother- TV producer, Father- university lecturer. Marital status' married. Ethnic background' White British.

She knew her baby had a heart defect, but not how serious it would be. The experience brought her...

So what was it like carrying through the pregnancy with this fear that once the baby was born something might happen to him?

It was horrible. It was - the horrible thing was that we didn't know for sure what type of defect it would be. Hypoplastic left heart syndrome is much more serious in terms of numbers of operations, risks to the child, and co-arctation of the aorta is regarded by cardiologists as something that's relatively easy to fix and, okay there's risks, but they're less than the other. So the most difficult thing for me was not knowing what we were facing, having to go for scans really, really frequently I think, every three weeks or every month, so every time I went for a scan it would remind me that we didn't really know what we were facing, that there was something serious wrong, and I tried to forget it between the scans and did quite well at that. But the scans themselves I would lie there almost always in tears, crossing my fingers, hiding the fact that I was crossing my fingers and being really superstitious, [laughs] just like crossing my fingers as if that was going to help, you know, of course it's not going to but, it sort of helped me.

What were you crossing your fingers against?

I was crossing my fingers that it was a co-arctation and not hypoplastic left heart syndrome. He did have a smaller, when he was born he did actually have a smaller left side of his heart but in hypoplastic left heart syndrome that left side of the heart doesn't really function, and so it has to be bypassed or they have to operate to let the heart function in a totally different way than one would hope, and with co-arctation you're really talking about more plumbing where you, the aorta has to been widened. And so his, they could see that his left heart was small but the question was would it function? So I was constantly crossing my fingers to think, to, I was constantly crossing my fingers to hope that that left heart would be big enough to function, strong enough to function.

Did this, you know, the terrible anxiety of waiting to find out what would happen to your baby, did it put, what sort of impact did it have on your relationship with your husband?

Once we knew that there was going to be a problem with our child it, it really threw us together in a very bonding way. It was - I know from other people's experience it can work the other way, but for us it was very much, we sort of clung together like people adrift on a raft at sea. And from the very moment we found out it was very much supporting each other. I think perhaps the exception being that first weekend when I was doing one thing, which was doing lots of research, and he was doing the other thing which was very much sticking his head in the sand really. Or dealing it, with it in a very different way, which was waiting till we knew what the facts were. Once we had a broad diagnosis we were very much together and very much, you know, we went straight to the pub, had some lunch and cried, both of us, when we've heard there was definitely a heart defect, and after each scan we would go to the local whatever pub, restaurant, somewhere to just take the news in and deal with it to some degree, because it was always very emotional going.

More needs to be done to support women's emotional and mental health in pregnancy, especially...

The most important thing was, I really value information, and the information I got from the heart specialists particularly was always brilliant, always really straightforward, always really clearly explained, and they, there seemed to be no limit to how much they would be willing to tell you. And when my son was on the verge of death they were quite, very straightforward about his chances, what might happen if he lived, and I really appreciated it. I just wanted them to talk to me and give me all the information. When I had postnatal depression I had the opposite, which was - I didn't get a clear sense of what was wrong with me from anyone. Until I really, really, really, really sought it, and even then I wasn't really sure. Until I, as I've explained, by accident found this woman who specialised in the area. So I do think it's important for people to understand what's wrong with them so that they can then work out how best to cope. 

So straight talking is really helpful and information is really helpful to someone like me. And really I think there has to be an anticipatory system in place for women that are going into a second pregnancy having had a very ill first child, or actually thinking about my other friends, anyone that's had a traumatic birth. I mean, yeah, anyone that's had a traumatic birth is going to be very anxious about the birth, the second time, and there are, I think there's a friend of mine who had a traumatic birth who's probably not very keen to have a second child at the moment. So I think there's more to be done in terms of women's mental and emotional health around pregnancy and birth, and especially if they have an ill child it's just, it's a very difficult experience.

Her original plan to have a home birth changed when she found her baby had a heart defect. She...

When we were talking, when I was talking about the, with the consultant about methods of labour and delivery, she was saying that for my son it wouldn't matter what sort of delivery I had as long there wasn't anything traumatic in terms of it being very traumatic or long or - she wasn't concerned about long labour, she was concerned about anything that might affect his heart rate. So nothing that she wouldn't be concerned about with other children really, or other babies, but..

Where my consultant was very good, she was trying to identify the fact that I was going to have issues about wanting to make the birth as simple as possible and also she talked about how it would help the paediatricians to know when my unborn baby was going to arrive. So she was saying if we could do either a caesarean or an induction then we could plan to have a daytime birth for your child. Which means the paediatrician's going to be more awake, there will be more of them around and they'll know that he's en route. So I went to the speak to the paediatricians who ran the special care baby unit. Because I was sort of incredulous that it would make much difference to them when he arrived really, and I didn't want an induction and I didn't really want a caesarean. 

In fact before I got into all of this I was planning a home birth, and, and if not, then as much of it at home, much of my labouring at home as possible. So, I went to speak to the paediatrician who ran the special care baby unit and she said, 'It would make a big difference to know that your child was going to arrive at a particular time of day and in fact lunchtime would be good' [laughs]. She said, 'No, but seriously, daytime when there's more of us around, we haven't been hauled out of bed'. Because I think the consultants come and work during the day, and then come into the SCBU, special care baby unit, at night if there's a real need for them. So if she could do it within her regular hours when she was going to be wide awake, then she was going to be happier. So I said, 'Fine, okay well, in, if that's the case I think induction's going to be a less exact science.' So I said, 'All right, let's have a caesarean'. And that really surprised me because I really - oh I did resist, I did really investigate whether it was going to be worth it and it was, it seemed to be. So against all my previous plans I went for a caesarean, and I have no regrets at all. It was really the right thing to do and I'm actually really grateful to the consultants who were really being quite honest what would help. Because firstly when it came to the crunch I didn't really want him to come out, I didn't want to give birth. Having since given birth naturally, vaginally, I know that it's not easy and you have to really want to push and to release your baby into the world, and I don't think I was in the mental state to really want to do that.

She panicked when the midwife took her second baby away to give her a rest. The midwife did not...

There was one particular instance, when the impact of having a ill son really impacted on my experience in hospital after having my daughter, was when in the middle of the night I was having real trouble feeding my daughter and real trouble getting her to sleep, one of the midwives in really quite a kind gesture, took her off to try and get her to sleep, but there was no way I could then lie down get sleep for myself. I was hopping off the bed with fear that she was taking her away and I know rationally that she wasn't, her job was to help me.

[Mmm].

But having been there after having had my son in the same hospital, him having been taken away unexpectedly, much more quickly to the heart hospital than planned, and being left on my own without a baby I actually had a panic, I panicked, and had to sort of run crying to the midwife to get my baby back. Whether or not I was going to get any sleep, I didn't care, I needed her in my sight. And the midwife was quite offended and said, 'What, do you think I'm going to run off with her or something?' And she wasn't particularly harsh, but she was sort of ridiculing me for being panicked. And I don't think she knew what had happened to me before, and she said, 'Is this your first baby or something?' And I was like, 'No, it's my second baby, but my, my first baby had really bad heart, heart problems and was separated from me very early and it' - I don't know whether I was even that articulate. I just sort of tried to explain why I was panicked and she sort of, I don't think she really understood.

She went back to work after her son's health improved, but became depressed. Counselling helped...

When my son, my first son, my first baby was one I got very depressed. I'd been back to work for two months and I'd acknowledged in my mind that he was now out of the big woods that we'd been in. He, his heart was looking good and his health was improved. So we'd got effectively the all clear in January, I'd gone back to work probably a week after I'd got the all clear. So I hadn't had very much time for myself to recover my strength physically or emotionally, but I'd already been off work for ten months and for someone like me, who's used to having a full-time income, I was already going to a part-time income, I'd already been on unpaid leave and a bit of compassionate leave, but the money was really running out. And so I just sort of got brave and went back to work and just went with it, and actually two months in I crashed and burnt. He was one. And I, I wasn't really willing to give it the label depression, but now in hindsight I probably would say I was depressed. 

Physically I was exhausted, I didn't feel like I wanted to get out of bed in the mornings, despite the fact I had a one-year-old to care for. So I sought help from my doctor and I did actually get a counsellor through that episode of depression. So actually ever since I've been seeing the same counsellor, and so I did have a sort of basis of support in the sense that I was talking to her about what I'd been working through, what happened with my son being so ill, working through some of the emotional stuff that I hadn't been able to process at the time because everything was so full on. There was stuff that I just had to work through after, after the event. And so my counsellor was actually quite helpful when I got pregnant again talking about how it might bring back some of the emotions that I'd felt around having [baby], having my son. So yeah my, my counsellor helped me think about how being pregnant again may have, be impacted upon by having had such an ill son, my first baby. But that was something I went out and sought for myself really, I got and, and, you know, a telephone number from my GP, but, I didn't, you know, that counselling was something that I was paying for and was working with on my own.

Does it help?

It did help. I think, it's definitely helped me sort out how I feel about having had a son with a heart defect and how I feel about being a mother. Because I sort of had a baptism of fire into being a mother, you know. It wasn't, I don't think it's easy for anyone to become a mother especially - I don't know, in our society we're quite busy professional workers, and having had a career and then becoming a mother, also having a career that's sort of taking a back-burner, you're making compromises of your own life about, you have much less freedom to do what you like, so I, like everyone, I had to sort focus on what that felt like.