Coming to terms with miscarriage

Published on Friday 20 May 2011 20:36

Recent months have seen celebrities suffer the anguish of losing babies well into their pregnancies. Here, our reporter talks to two women who know what it's like to experience such heartbreak

A FORTNIGHT ago actress Kelly Brook, 31, lost the baby she and Scots rugby star Thom Evans were expecting, during the fifth month of her pregnancy.

In February, Amanda Holden, 40, lost her baby seven months into her pregnancy, after experiencing a first trimester miscarriage some months earlier. And late last year Lily Allen, 25, also miscarried for the second time, four months into her pregnancy.

Are more British women losing babies later in their pregnancies, or is this raft of sad headlines the result of changing mores that mean pregnancy is no longer hidden away? The truth is, even doctors struggle to say. According to statistics compiled by the Information Services Division (ISD), in the year ending in 2009, in Scotland there were nearly 6,000 miscarriages requiring hospital in-patient treatment. But while the numbers are broken down regionally, the number of weeks into a pregnancy isn't recorded.

First trimester miscarriages (weeks one through 12) occur in roughly 25 per cent of pregnancies, sometimes even before a woman realises she's pregnant. When a baby dies after 24 weeks, it is legally classed as a stillbirth. In April the Lancet published startling statistics on stillbirths – the UK is amongst the most poorly performing of the 35 high income countries, ranking 33rd.

But data on mid-, or second trimester miscarriages (weeks 13 through 23), which are known to occur less frequently, isn't well documented. Dr Asha Shetty, a consultant at Aberdeen's Maternity Hospital and honorary Senior Lecturer at the University of Aberdeen, says: "We're quite bad at collecting data about gestation. We're very good at collecting data on stillbirth, but we don't have a rate for second trimester miscarriages, unfortunately. It is about time we started to tighten that."

We do have figures from the Scottish Perinatal and Infant Mortality and Morbidity Report (SPIMMR), which reports on Late Foetal Deaths only for weeks 20-23 of pregnancy. The number notified to the survey in 1998 was 181, in 2001 it dropped to 144, and for the year ending 2009, it was 136, suggesting that in Scotland the rates of second trimester miscarriage are improving somewhat.

Often, with a second trimester miscarriage, the woman arrives at hospital in labour, Shetty explains. "Sometimes you can't do very much for the foetuses even if they are born alive. They're almost below what we call the stage of viability. It's a huge grey area, even for neonatologists. If somebody delivers around 22 weeks, how much resuscitation do you do?"

Matters are complicated because the reasons for miscarriages and stillbirths vary enormously, and can even vary for the same woman in subsequent pregnancies. Shetty says: "You can explain what happened this time but you can't predict what will happen next time, and if you can't do that, how can you be sure of preventing it? Unfortunately, that is the case with a lot of mid-trimester foetal losses."

Professor Gordon Smith, Head of Department of Obstetrics and Gynaecology, Cambridge University, whose research focuses on stillbirth, says: "Just about every type of health is improving (in Britain], but stillbirth is not showing significant signs of change over the last ten years. Most of these losses don't have a very clear explanation and occur to women who have a very low risk. With the Lancet review, the conclusion was, if you look at smoking, obesity and advanced maternal age, even taking all three of these risk factors together, it only accounts for about one in three stillbirths. A minority of stillbirths occur to women with risk factors.

The normal stillbirth, if there is such a thing, is occurring to a healthy, low-risk person. Less than five per cent occur to women with a significant pre-existing medical disorder, such as diabetes."

Scotland fares no better or worse than the rest of Britain, he says. "Scotland is about in the middle of British experience. There's about a 30 per cent variation between the area in the UK with the lowest rate and the area with the highest rate, and Scotland sits in the middle of those two."

Despite increased public awareness, he adds, "I still think it doesn't have the profile that is commensurate with the magnitude of the problem. In the UK, in 2009, there were over 4,000 babies stillborn. That puts it in the category of a significant public health problem. And many of these are potentially preventable deaths."

The Miscarriage Society and SANDS are two great resources for families who are coming to terms with the loss of a baby. Both offer a wealth of invaluable information ranging from the risk factors and symptoms of miscarriage, to an explanation of what to expect legally, physically and emotionally, after losing a baby. They sponsor hotlines and online support forums, and can help you find out if there's a support group in your area.

CASE STUDIES

'I don't like referring to Caitlin as a miscarriage'

ALISON DURHAM, 33, is a full-time mum. She's been married to Tim, an IT consultant, since 2002. They live in Portlethen, and are parents to Grace, 4 and Ryan, 1. They lost daughter Caitlin, born 15 June 2008, at 21 weeks and four days.

Before having her daughter, Grace, Alison had three miscarriages between nine and ten weeks into her pregnancies. Doctors reassured her that while this was unfortunate, there was no reason she shouldn't fulfil her dream to become a mother.

She's never smoked, isn't obese or ill, and was extremely careful during her pregnancies, not taking so much as a paracetamol, lest it cause harm. After the third miscarriage she and Tim had genetic testing and blood tests, but no explanations were found. Alison says: "It's not that you want anything to be wrong, but you want there to be a reason, because maybe it would be an issue we could do something about."

When she became pregnant a fourth time, with Grace, she was referred to the Aberdeen Maternity Hospital's special Rubislaw Ward, whose staff she praises as exceptionally kind and sensitive. She had extra scans at six, eight, and ten weeks.

"My pregnancy with Grace was perfectly normal, though we were very nervous. I couldn't quite believe that we were really going to get our own baby to take home. She was our little miracle."

Alison's next pregnancy seemed to be going well, but at the 12-week scan doctors found increased nuchal fluid at the back of the baby's neck.

"It can be a sign that something is seriously wrong or it can be a false alarm. We were offered testing, but didn't want to do anything that carried a risk of miscarriage. We just had to wait for the 20-week scan, which was very hard."

Sadly, their baby wasn't well. The 20-week scan revealed that Caitlin had a malformed heart and that her kidneys weren't functioning. The Durhams agreed to amniocentesis, but the test came back clear. "We saw a consultant, on Friday 13 June, who said there was nothing wrong chromosomaly and that they didn't know what caused her heart defect."

They had another scan there and then, which confirmed the worst. "Caitlin's heart had stopped. She had died. Although part of me knew that might happen, it was such a shock to see it on the scan."

Alison was given a pill to induce labour, and returned on the 15th – ironically, Father's Day – to give birth. Caitlin was two weeks' shy of being officially classed as stillborn, but that's not how Alison sees it. "I went through labour and delivered and gave birth to her. I don't like referring to her as a miscarriage. Although it was devastating going through the earlier miscarriages, this was completely different, because we had a little baby, and held her and spent time with her.

"We got a birth certificate, though it's not official, and the midwife took her hand and footprints and we took photos. They offered us counselling but Tim said because we had the support of our church, we weren't going to take it up at that point. I did join a forum through SANDS, where I spoke to other mums who had lost babies. That, our church, and our families have been our main support."

They also decided against a post-mortem, unconvinced that it would tell them much more than what they already knew. "To be honest, I just couldn't bear the thought of somebody doing that to her."

Six months after Caitlin was born, Alison was pregnant again. "Ryan was planned. I very much wanted to be pregnant again. Not to replace Caitlin, because you couldn't, but as a woman, I had that longing. The baby I was supposed to have in my arms wasn't there. Having Ryan didn't take away the pain of missing Caitlin, but he's brought us so much joy and so much hope again."

Alison always marks Caitlin's birthday, but has discovered that not everyone feels comfortable saying something on the day. "It's almost as if people are afraid they'll remind us of our loss. But it's not as if we need reminding. If people don't say anything, it feels like they've forgotten, and I want Caitlin to be remembered, and for people to acknowledge that she was here, and the day that she was born. If anyone is wondering whether it's right to say something to a friend or not, I'd tell them, yes – even a message saying, 'Thinking of you today' is meaningful."

'They knew what killed Amy, but not what led to that happening'

CAROLINE WRIGHT, 41, a manager for Prudential Insurance company, has been married to Stuart for ten years. They have five and a half year old twins, Lisa and Emma, but lost daughter Amy after a full-term pregnancy, on 8 March 2004.

Caroline became pregnant with Amy on the couple's fourth attempt at IVF. "After three years of fertility treatment and poking and prodding, conceiving was the biggest miracle for us. Losing the baby was a kick in the teeth. It was an absolutely fine pregnancy. I was 34, don't smoke, nor do I drink much at all. I didn't put on vast amounts of weight and my blood pressure was perfect. I worked right up until two or three weeks before my due date. The only concern we ever had was that at 37 weeks they thought she was breech, but a scan showed that she was fine. I had a check a few days before my due date and my consultant performed an examination, and everything was perfect."

Amy was due on a Friday. On Saturday, Caroline and Stuart went out for lunch – their last hurrah before life became too busy. The next morning Caroline taught Sunday school as usual, but afterwards, she found herself thinking that the baby hadn't moved much. When there was still no movement later that afternoon they headed for Stirling Royal Infirmary. A scan confirmed the worst: there was no heartbeat. Their daughter had died.

Caroline still had to go through labour – and it was a long one. "I thought, 'It's the least I can do, because it's the only thing I'm going to get to do.' I thought, 'This is my part in the whole thing, I have just got to do this, even though there's no actual reward coming at the end.' When she was born I had a little hope – maybe she'll cry, maybe they were wrong. But obviously there was nothing." Amy weighed 8lb 6oz, and there was nothing obviously wrong, but a blood sample showed that her blood had mixed in with Caroline's, which shouldn't happen. A post mortem eventually revealed that she'd suffered a foetal maternal haemorrhage.

"They knew what killed her, but not what led to that happening. Every mum asks herself 'What did I do wrong?' I analysed everything from the day of my last antenatal check. You feel so responsible because you're the mum, you're supposed to look after this baby, you're the vessel for her to grow in. Seven years later, I've finally stopped asking 'Why', because we're never going to get an answer. Leaving hospital with nothing was one of the hardest things. And nobody knowing that you are a parent and you had a baby. You want to scream, 'I just had a daughter!' But there's no evidence."

She has nothing but praise for the care she received at Stirling Royal, especially the midwife who stayed on after her shift finished, until Amy was born. But, says Caroline, there was no bereavement counselling offered via the NHS. "Very few hospitals have bereavement midwives. I was given leaflets about the charity SANDS (see box]. I didn't cry, being told she died. I didn't cry during labour. I cried, eventually, when I got home. I looked out the kitchen window and thought, 'She's never going to run around this garden in red wellies'. Having the SANDS information told me that this must happen to other people, or the charity wouldn't exist. Only people who have had the same experience fully understand how utterly shocking it is."

Lisa and Emma are happy, delightful wee girls, but, says Caroline, "People think now that you've got a healthy baby, it's fine. But actually it's worse, because it reminds you what you've lost. You always have somebody missing. And every anniversary – such as the day when Amy was due to start school – you feel utterly bereft.

"The stillbirth rate in Scotland hasn't improved in 20 years. Yet it's a very taboo subject. People don't want to talk about baby death; they don't want to acknowledge it happens. I've never shied away from talking about it. I love Amy being acknowledged."