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Alison

Age at interview: 30
Brief Outline: Alison’s second pregnancy when she was 28 followed a miscarriage at 12 weeks. Her 21 week scan with her second pregnancy showed her baby had no kidneys. She gave birth to her son early knowing he would not survive. He was born showing no signs of life.
Background: Alison is 30 and is married with a 1 year old child. She works as a museum curator.

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Alison’s first pregnancy ended in a miscarriage at 12 weeks which she found very traumatic. Alison soon became pregnant again and all was progressing well with no problems showing at her 12 week scan. However during a routine scan at 21 weeks, there was concerns. Her baby did not appear to have any kidneys and there was a lack of fluid around him. Alison and her husband had a difficult weekend, as they waited to see a consultant to confirm what was wrong with their baby. They spent time looking at the Internet to find out what might happen if their baby was born alive. Alison did not want her baby to suffer and found the idea of carrying her baby any longer too painful. The consultant confirmed their baby had no kidneys and would only survive for a few hours. Alison and her husband decided to induce labour and give birth to her baby, knowing he would not survive. Unfortunately the hospital’s bereavement suite was already in use so Alison gave birth in another room. Being near other women giving birth to healthy babies was hard. Although her baby was alive when Alison’s labour started, her son was born showing no signs of life. She was pleased with the care midwives took with her baby after his birth. They wrapped him in a blanket, gave him a hat and placed him in a basket. 

Alison and her husband agreed to a postmortem to understand why their baby had died. It confirmed their baby didn’t have any kidneys and wouldn’t have survived long after birth. Alison found the charity ARC, Antenatal Research and Choices, very helpful and talked online to other parents who had similar experiences. Going back to work was hard. She had conflicting feelings about another pregnancy, she wanted to try for another baby but felt it might be disrespectful to her son. When she did become pregnant again, Alison was very anxious particularly around the anniversary of her son’s death. But this time there were no health problems and she gave birth to a healthy baby girl at 40 weeks.
 

Alison described the loss of her son at 21 weeks of pregnancy compared to an earlier loss at 12 weeks.

Alison described the loss of her son at 21 weeks of pregnancy compared to an earlier loss at 12 weeks.

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I think [sigh]. It was because he was - The later pregnancy, you've felt them. I'd felt him move. He - Everybody knew. And a lot of people, like a lot of very close friends knew about my first pregnancy, but. Yeah. It was kind of like that was our accepted fact, that this was it. Whereas you - although we hadn't expected to have a miscarriage, it's - that's more common. And so [sigh] after a little while, it was kind of like 'right okay, well this is a normal thing that happens'. With the second pregnancy, it was like, 'well this is what our life is going to be', and then that was snatched away. And we'd bonded. And seen him on the ultrasound, so.

With the first baby, we'd never seen - I think no, actually, I think I'd been in at seven weeks and had seen a tiny little - tiny little dot with the first pregnancy. But it wasn't kind of seeing a baby on there. So it was - And then the actual process of giving birth, the fact that you did actually - I did give birth to him. And I don't - I think a lot of people just don't - they don't either think or realise that that is something that you go through. And so that, that all still happened. Yeah. And I still - I mean, this all quite hard to talk about with anybody that I know. 
 

After the diagnosis was confirmed Alison decided to take the tablets to prepare her body for labour.

After the diagnosis was confirmed Alison decided to take the tablets to prepare her body for labour.

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They offered for us - they said you can go - there was - they didn't put any pressure on us, to make a decision then. They said, this - we can do this for you, - but because we'd had the long weekend of working it out, we just didn't want to, yeah. It was all - It was all quite a blur. So they, yeah, so I took the medication there, and I think we were - I don't know whether they were surprised that I just kind of wanted - after we'd had all of that time to think, it hadn't been - it hadn't been a short amount of time we had. And then - So we stayed in the hospital. And I – They’d - they'd vaguely said that - And I think at that point I hadn't realised properly that I'd have to actually give birth. I thought - I don't know what I thought. I just don't think I'd thought about it, because you just don't. And there was an idea that, oh it'll – I’ll - . And so they, the midwives explained that it'd be going through giving birth, rather than any other procedure. And I think he was maybe just too big to do anything else. But in hindsight, that experience - as awful as it was - I think it would have been harder to not do that, in hindsight, to have not actually given birth. Yeah. So [sigh] I was on the, on the ward, on various drugs to start labour going. Because obviously my body didn't really want to, and that took - it took quite a long time. We got there - I think I'd taken a pill then we came back the next day.
 

Alison explained how her baby “really looked so perfect” although she knew he had a severe problem with his kidneys.

Alison explained how her baby “really looked so perfect” although she knew he had a severe problem with his kidneys.

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And then he was, he was born. In the early hours of the Wednesday morning. He was stillborn. His heart had stopped in the womb. Because like, because of the stress. He was quite red. He was really tiny [in tears]. Yeah. So he was. But he was beautiful. Like he really looked so perfect, apart from - He wasn’t. And then his hands and feet were still so tiny, and kind of fused together. But he did look like a real tiny baby. 
 

Alison’s baby had a rare kidney condition and decided to have a post-mortem to help with research.

Alison’s baby had a rare kidney condition and decided to have a post-mortem to help with research.

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And we'd, we'd given permission for I think - I can't remember at what point we talked about this. It was - some point in the process we talked about autopsy. 

Because we kind of wanted to - We wanted to know what had happened, and if there was anything that could be done to help other - Because the, the chances for research on this are so rare. So we allowed them to do a full autopsy, to see what the, the cause was. It was as they had diagnosed on the ultrasound. He, he was - he didn't have any kidneys at all. And so the - And we got the results of that quite, quite a while later. I think that took - that took a little while. 
 

Alison found it helpful having a written copy of the report to remind her of things that she was told when she was in hospital.

Alison found it helpful having a written copy of the report to remind her of things that she was told when she was in hospital.

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So, when you went back to the hospital after Axel's birth, how long did you have to wait for the post-mortem? 

It was a couple of months. Six weeks, eight weeks? I can't - I remember it being quite a long time that, I think I was back at work. And we went back in and talked it - and the consultant went through everything with us, and that we were sent out a hardcopy with all of the details on it. Because we'd. So that - I think because like when actually you're in the hospital you're kind of - you're not necessarily processing everything. So to have the hardcopy at home kind of was, actually you can look at it and see all of the details, and have all of those still available. What we didn't have was, was all of my pregnancy notes. Because they get - they got - they get taken away. They got taken away with [my daughter], as well. So, all of the letters about how she'd progressed. Which actually I'd quite like to have, for future pregnancies as well. Because you could kind of have a look, and reassure yourself that this is what was happening at that point, and things. So, yeah. So it was a couple of months. 

And was the report that was sent to you - Is that accessible? Is it easy to read, or?

Yeah. Yeah, it was fine. I think it - I mean, obviously I don't have any medical background. I think it was - I remember it being laid out, different areas of the body. And then describing. I think some of the language was a little bit - but you could, - because the doctor had talked us through it, and explained. It was written in medical language, not in necessarily that easy to understand. But it was - I think we found it okay, we understood what it was saying. Yeah. So it was, yeah. 
 

Alison found a “terrible camaraderie” being with other parents who had also experienced a loss.

Alison found a “terrible camaraderie” being with other parents who had also experienced a loss.

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I think because you've kind of gone from you're pregnant and you're going to have a baby, to your baby has died. And you've not really had - We didn't really know anybody that - we do know people, but people don't talk about it. So we couldn't really kind of talk it through. And we could - he could still have had a private burial, which we didn't, we didn't go for. Because the idea of organising it ourselves was quite - not something that we were in the head space for. If we'd had a few months to think about it, then maybe. But not, not in the heat of the moment - the idea of organising the funeral was, wasn’t something we were interested in at the time. But. I've forgotten what your question was [laugh].

So did the hospital organise that for you?

The hospital organised it. It was the, it was - They have a cremation service. But because he'd had an autopsy, that's why it was a little bit later. So, yeah. The hospital organised it. It was, it was a group cremation service, so there was a few other people at the ceremony. Which I actually - I didn't, don't enjoy, and it was awful. But having other people there that had been through the same thing, rather than - rather than friends and family, like everybody there had experienced the same loss, so it was some kind of terrible camaraderie, I think.

But I don't think everybody would feel it that way, but. That's kind of the way we looked at it. Yeah. Yeah.

Yeah.

They organised that. And there wasn't - We didn't really have - There wasn't - We didn't have to do anything, we didn't have to go, and there was a funeral service programme that we've kept.
 

When Alison was concerned about her baby’s movement she appreciated the support of her midwives.

When Alison was concerned about her baby’s movement she appreciated the support of her midwives.

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But knowing that they wouldn't laugh at me, and say "You're being stupid, go away." That they were completely understanding every time I spoke to them on the phone. And every time I went in 

That they would actually - yeah, that they didn't dismiss my worries at any point. And I don't, and I don't think that they knew about my previous experience. I can't remember at what stage they did and didn't know. So, that was quite useful. And within that, one of the midwives I remember we'd had like the - where they strap your belly up for the - I don't know what it is. For the, for recognising the heart rate. And I remember she took a few minutes out, to like sit us down and fully explain everything about the readings, and why that meant that everything was okay. And that was amazing. Because like she - otherwise you're just kind of saying "Oh, it's fine." But she actually explained, sat down and explained that this is where I'm getting this information from, and this is why I can tell you that you're alright. So that was incredibly helpful, just for like three minutes of her time. It saved a lot of anxiety after that, so. 
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