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.
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.
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Joelle and Adam felt unsupported when they were deciding whether Joelle should have treatment to try to delay the birth of their baby.
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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.
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Joelle explained how the bereavement suite made her feel less like a patient in hospital.
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Joelle wished someone had suggested that her parents might like some time with the baby.
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Joelle wished someone had suggested that her parents might like some time with the baby.
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Joelle and Adam explained how they made the decision to leave their baby.
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Joelle and Adam explained how they made the decision to leave their baby.
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Joelle found other bereaved parents offered her unconditional support.
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Joelle found other bereaved parents offered her unconditional support.
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Joelle and Adam described the support of some amazing friends.
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Joelle and Adam described the support of some amazing friends.
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