Joelle and Adam

Brief Outline: It was Joelle and Adam’s second pregnancy. Joelle went into premature labour at 21 weeks. Their son was born showing no signs of life. They were both aged 33.

Background: Joelle and Adam are married. Joelle is 34 and a healthcare professional and Adam is 34 and is an accountant.

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Joelle and Adam’s first pregnancy had ended in a miscarriage at 9 weeks. Shortly afterwards Joelle became pregnant for the second time. Joelle’s chronic fatigue syndrome meant she found pregnancy stressful as it put a lot of strain on her body. Throughout her pregnancy Joelle had a feeling that something was wrong but doctors and midwives reassured her that her pregnancy was progressing well. A routine scan at 20 weeks of pregnancy showed her baby was growing well and she began to relax. However a few days later Joelle had some light bleeding. The midwife suggested she come in to the hospital for a check. When she was examined she was told her cervix (the opening to the womb) had started to open. 

The doctors recommended putting a stitch into her cervix to delay labour and birth, although it remained highly likely that their baby would be born very premature. But Joelle and Adam found this was an incredibly difficult decision. Joelle works as an allied health professional and knows first-hand about the health problems premature babies may experience in later life. So she sought reassurance about whether the stitch would delay her going into labour until 28 weeks, a gestation that would mean her baby had a better chance of avoiding long-term health problems. Although the doctors could not give her that reassurance, Joelle and Adam finally came to a decision together to have the stitch put in. However the day after the stitch was put in, Joelle’s waters broke and her labour had to be induced because the risk of an infection was life-threatening for Joelle if she continued her pregnancy. She stayed in hospital for two days while she waited to go into labour. 

The hospital was able to offer a dedicated bereavement delivery suite, which Joelle found a helpful place for her labour. Joelle and Adam were left by themselves but had to call for help from a midwife when their baby was born. Their son, Jacob showed no signs of life. Joelle and Adam spent a long time with him, which they fondly remember. But afterwards they wished they had asked other family members to meet their son so that they would be able to better understand their loss. They decided to have a full post-mortem to help understand the reasons for their baby’s death, but found the appointment with the consultant to discuss the results very difficult. They felt the consultant dismissed their questions and didn’t help them understand the results of the tests. At the time of the interview Joelle and Adam had sought help from a private doctor to understand why their baby died and talk about future pregnancies. Joelle was about to return to work as a healthcare professional working with young families, which was daunting after her loss.

Joelle and Adam felt unsupported when they were deciding whether Joelle should have treatment to try to delay the birth of their baby.

Joelle: And no one could tell me anything. And I said, "Well, what's the impact of the cerclage?" And they couldn't give me any statistics at all. And obviously as a sort of [laughing] - not as a statistician, but someone who likes - I wanted to know what decision I was making, and I wanted to make an informed decision rather than just 'get just past twenty four weeks'. They'd already told me that at twenty four weeks they will resuscitate, no matter what. 

And I was like, "Oh, I don't - I'm not sure resuscitation no matter what is necessarily better than getting to twenty three weeks and five days and not." Like so it was - I - And this was all the decision that I had - like information that I hadn't ever really considered. Because once I'd got past twenty weeks, I was like 'everything will be fine'.

So we saw the first consultant. And I said I couldn't make the decision without more information. And then we saw about another four consultants, that morning?

Adam: Yeah. Three - I think two or three.

Joelle: Yeah.

Adam: And they all - none of them gave us any new information. And they were all –

Joelle: None of them gave any information at all.

Adam: And they were all sort of –

Joelle: Useless [laugh].

Adam: They all basically said, "Well, why - you know - why wouldn't you do this?"

Joelle: Yeah.

Adam: You know, they all assumed –

Joelle: Quite judgemental.

Adam: Yeah. Very judgemental.

Joelle: It felt very much like a 'well, you're not doing the best for your baby'. And actually, what I wanted was actually to make sure that I was bringing a child into the world who was happy and healthy. 

And so it felt like quite a lot of people were saying to us, "Put yourselves first. You can have another child." And the doctors were saying, "Have a cerclage. Why would you not have a cerclage?" [Laugh]. And your Mum was saying, "Have the op, have the cerclage." And my parents were saying, "Terminate." And it was just like - My head felt like it was about to explode. 

Adam: Mmm. Yes.

Joelle: And on the Tuesday morning, I think - I woke up, and I was like 'I can't terminate'. It was - it was the kind of 'I'm killing my child'.

But we both came to the same decision. Which was like 'actually, we think we're strong enough to do this'. So we decided to have the cerclage put in. And that - We sort of made that decision by about 8:30. 

Adam: Mmm.

Joelle: Together. Or had you come home and sort of made your decision, and?

Adam: I'd come - Well, I'd come home, thought about it. And I remember speaking to my Mum in the morning, before seeing you.

Joelle: Yeah.

Adam: Still undecided. Or still sort of weighing up the two. And then we went - I went into the room, and I think we both sort of came to the decision together at the same time, and it was the same decision.

Joelle: And there was just this feeling of like release, I felt. I don't care that - And it was very much kind of like the two of us are in it together, and really - It was the first time I think I actually felt like a grown-up [laugh]. Like I really - you know? Like - And people say you know, when you have your child, you realise where your parents are coming from. And that was the point at which I felt like the parent in this.

Joelle explained how the bereavement suite made her feel less like a patient in hospital.

So they put me in a Sands-funded room. I think quite a lot of the hospitals have them, it's like a bereavement suite, which was amazing. Going into the room was - it was like every - Like being able to have a shower. And stupid things, like they had shampoo and conditioner. And a hairdryer. And they had a bed for me but then they had - underneath, they had another pull-out bed, so that Adam could stay over. So it was more like the two of us together, rather than me being a patient in the hospital. And there was like a TV and like chairs. It was an amazing place. And also leaflets from Sands, and lots of books and CDs. And sort of - Not a home from home, but like - It was the first time I'd actually - there was information.

Joelle wished someone had suggested that her parents might like some time with the baby.

“They'd already told us we could spend as long as with him as we want. I guess the only thing that I was very sure at that point that I only wanted Adam there during the birth, I only wanted Adam there in the afternoon. And looking back, I wish someone had said to me, "Your parents - the grandparents might need some time with him, to come to terms with it themselves." Because actually we were there, and we met him, but there were times following that when I wish someone had - when I kind of - I wish my Mum had met him too, because there were times when I kind of think - She didn't mean it in a horrible way, like but there were a few comments where I was like "But he was real." And she wasn’t saying that he wasn't. But I very much felt that I was like, "But he was real. And you didn't see him." I guess it would have been an interesting discussion for someone to have sat down with us on that Thursday and said, ‘So you want it to be the three of you, because that's the family. Might there - might you be able to sort of leave him for ten minutes with the grandparents, because they might find that helpful? And as part of the grieving process, you might appreciate that they spent time with him.’”

Joelle and Adam explained how they made the decision to leave their baby.

“The midwife was lovely, and we got to stay in the room for as long as we wanted. And we kind of already decided before, that we didn't want to spend the night. So they give you the option of having the baby there overnight. And I was kind of like - I guess I was very practical, as much as – well you - I know I'm going to have to leave him at some point, and, for me, what was the advantage of keeping him there overnight? Because how do you sleep next to someone that you know isn't going to wake up, kind of thing. For me. So we'd already sort of agreed that sort of 5:30-ish that for us that was our cut-off point. Because I needed, I needed to know how much time I had with him. Because otherwise it was like well, at what point do I say it's enough, because it’s never enough? But at the same point, you can't keep him forever. And it was that reality. So, we gave him to the midwife. Again, I didn't really consider where, what was happening. At that point. Like now I think back to it, I think 'how did I do that?' But it was very much a kind of 'well you can't keep him'. No one said that. But like that was the practicality of it. And then on the Friday evening I stayed in overnight again. And they kind of just left us to it. Really nice. “

Joelle found other bereaved parents offered her unconditional support.

I think what's helpful is that there is like an unconditional support. You can say anything. So you can say, "I hate the fact that I'm covering someone's maternity cover." Which is what you want to say. When I say it to my Mum, she tries to solve the problem by saying, "Just leave." Or Adam will try and solve it. Or she'll reinforce it so much that a tiny thought becomes a huge thought. Whereas at the Sands meeting they're like, "That sucks." It's like 'yeah, that's all', you kind of just want someone to say that. And these people do. And also, it's useful to see people sort of a little bit ahead. So, it was the first anniversary yesterday. And you kind of think, 'actually, they've got there, and I can get there'. But it doesn't mean that you want to get there. It just means that you - And someone else who's like twenty five years further on, and you think - you kind of think 'oh my god, this is going to be here forever'. And there's that fear. But also you've seen that they've had another child, they've got on with their lives. And you don’t, you never really want to get on with it, you just want to find a way, a new way through it.

Joelle and Adam described the support of some amazing friends.

We saw family and some amazing friends. Like because a couple of my school friends just asked the right questions. I don't know how. Don't know how they did it. But like one of my friends came over, and was like, "Have you got any pictures of him?" And I said to her, "You don't want to see a picture." And she was like, "No, I do." And that made so much of a difference. Just asking. And I was like "No, you - you don't want to see a picture of a dead baby." But just asking was amazing. And asking questions that you would have asked a mother who had a child at home who was alive. Like, "How much did he weigh?" "What name did you give him?" "Tell me what happened." And just letting me say - But enough people asking me, that I could give information. So, that - And I think that made a huge - like a huge difference. When we were in hospital, we'd sort of said "Well, who do we tell?" And our general rule was the people who we're very close to, who were sort of the bridesmaids and groomsmen from our wedding, we'll tell sort of straight away. And everyone else we'll kind of - who came to the wedding, we'll filter the information through over the next few days. And if they didn't come to our wedding, they're clearly not close enough friends, so we're not going to tell them. And I don't really believe in putting everything on Facebook, so I hadn't put that I was pregnant on Facebook, and I wasn't about to announce it to the rest of the world. But all of the friends who we told were amazing. Like the house was covered in flowers. Cards from people. Even like my friends who are pregnant, who I was really nervous about telling - because actually I think it was worse for them than it was for me. In Judaism there's a thing where if someone dies, you bring over food. So, again, like a couple of people just brought over food. And it made such a difference. And I'd never understood it before. Like we've always been in households where someone's died, and I - "Why do you take over food?" And now it's like I didn't have to worry about Adam eating, because I knew there was food in the fridge.