“I had no idea that Matthew had died till he was born,” says Sue Hale. “The midwife said, ‘I’m so very sorry, he’s stillborn.'” Matthew was – is – Hale’s second child and her pregnancy was straightforward and low risk. Her first child, Chris, had been born without complication, two and a half years before. “My husband Steve was pleading with the midwife to do mouth-to-mouth, which she tried, but it was no use.
“Steve called the ambulance but when they arrived it was very clear Matthew was dead, so they went away again.”
The midwife asked the Hales if they wanted to hold their son, which they did. “Steve was absolutely devastated to see me rocking, holding Matthew.” She went into complete shock.
Matthew was wrapped in a blanket and placed in a moses basket. After a GP had been to certify the death, they went to the hospital. “Matthew stayed there and we came home.”
Sunday passed, “in a complete blur, but we both woke up early on Monday morning and said, ‘We need to see him again.’ The shock had subsided slightly and we felt that he was our son and we needed to say goodbye to him.” They went to the hospital again.”We said our hellos and goodbyes,” says Sue.
Matthew weighed 8lb 13oz (4kg), a full 2lb more than his brother had. Both were born at 38 weeks. Matthew’s funeral was held a fortnight after his birth and the postmortem results showed nothing conclusive.
Afterwards, Sue found that people really did cross the road rather than talk to her. “People didn’t know what to say.” Yet she wanted to talk about her labour. “I was proud of Matthew and I wanted people to ask about him – how much he weighed, what he looked like, that sort of thing.”
The couple’s families were very supportive. But some people said “dismissive things, like ‘At least you’ve got one’ and ‘At least you’re healthy.'”
“I thought we were coping OK, but one night, about a month after Matthew died, I was reading to Chris and he said ‘This house is too sad for me.’
“I was scared of moving away from the grief once Matthew had died. I wanted to, but I was scared of forgetting, as that’s all I knew of him,” says Sue.
Then the Hales heard about Sands, the Stillbirth and Neonatal Death charity, which runs a specialised helpline, and Steve called their local branch. “I think he was so desperate to do something – they were very kind.”
They went to meetings and met others who had been through a similar experience. Sue says: “I decided to try to change how we were doing things. At Sands you realise you’re not the only one. I didn’t feel so isolated.”
A few months ago, I answered a letter in the Problem Solved column on 15 September in the Family section. It was from a woman whose mother, some 40 years before, had given birth to a baby girl who died a few hours later. Could the maternity notes still be found? How could the writer help her mother? The older woman, not surprisingly, was still mourning the death of her baby, four decades on. At the time, the general procedure in such an event was not to dwell on it: questions weren’t encouraged, information wasn’t shared. The baby was taken away, and that was that.
My research led me to Sands. The people there explained what they could do for the woman whose daughter had written in: she could visit a local group, talk on the phone to someone who knew what it felt like and, if she would like it, they could help her to trace her baby’s grave.
The specially trained counsellors who staff the helplines at Sands are called befrienders and most are bereaved parents with their own experience of grief.
Today, although much is done at local level – meetings, and the befrienders work from home – Sands’ headquarters is in central London. This is where I meet Sue. She looks after all the Sands groups, of which there are around 100 nationally.
But for the last 15 years or so, following the death of her son Matthew in 1995, she has also been a befriender.
Sue is easy to talk to. No question is avoided, nothing is too difficult or gauchely worded for her to answer. The thing to remember is that most bereaved parents really want to talk about, and have people remember, their baby son or daughter.
Sands makes it possible for such parents to talk to people who have been through the experience – it’s the difference, says Sue, “Between empathy and sympathy. Someone who hadn’t been through it could only give me sympathy. Sympathy’s not wrong, but it can be a detaching emotion. People who hadn’t been through it were keener for me to move on.”
Sue found the period around three months after Matthew’s death especially hard. “People assume you’ve got back to normal. But you don’t get back to normal. I learned that I would reach a new normal,” she says.
At Sands meetings there were bereaved parents who were expecting another child – “Which I initially found very hard” – but there was also laughter at those meetings. “It gave me hope that I’d laugh again. People didn’t talk about trivial things – they’d talk about how to cope at Christmas.”
The Hales went to meetings for support but found that they also ended up giving it to others.
Then, six months after Matthew’s death, Sue got pregnant with her daughter Izzy, now 16.
About 18 months after Matthew’s death, Sue and Steve both trained as befrienders and have been involved in Sands ever since, Sue in a paid role since 1999.
Sands was started in 1978 by a psychiatric social worker, Hazelanne Lewis, and the journalist Bel Mooney after both women had given birth to stillborn babies. Then, most parents were not allowed to see or hold their babies; there were no rituals to help them grieve or remember. Many were not told where their babies were buried. Mooney and Lewis sought to change that.
One of the first things the two women did was to get the name of the stillbirth disposal certificate changed: it’s now the certificate for the burial of stillborn babies. Subsequent changes enabled bereaved parents to get a stillbirth registration certificate with the baby’s name on it and exemption from NHS charges for bereaved mothers. A teardrop sticker was introduced for use on the maternity notes of bereaved mothers to alert health professionals not to say anything insensitive.
In 1992, after four years of lobbying, Sands got the Stillbirth (Definition) Act changed to reduce the stillbirth definition from 28 to 24 weeks (it used to be defined as a miscarriage). Now, any baby born at 24 weeks or more is “recognised as an individual whose birth and death must be registered”.
Sands encourages the use of memory boxes, in which parents can place photographs, foot and handprints, perhaps a lock of hair. This would have been considered taboo 30 years ago. Not every parent wants to do it, but at least hospitals are now primed to offer such a service.
But there is more to Sands than bereavement support. There is a section dedicated to research and prevention. And this is where things get really shocking. In Britain, 17 babies die every day, before, during or soon after labour. That’s 6,200 every year. This statistic has remained unchanged in 20 years and among similar high-income countries the UK’s stillbirth rate is 33rd out of a total of 35.
One in 200 babies is stillborn and more than 30% of these are born at term (after 37 weeks) and are of normal weight and perfectly formed, and might have survived had they been delivered sooner.
While Norway and the Netherlands have reduced stillbirth rates by a half and 40% respectively in the last 20 years, Britain hasn’t.
Only about one in 10 stillbirths are caused by a fatal congenital anomaly. In more than 60% of stillbirths there is no clear cause; but in half of those with no known cause, the babies were small for gestational dates. Around 500 babies a year die due to something happening in labour that was not properly managed or anticipated.
Why do so many babies die? This is a difficult question, and there is no single answer. With cot death, after proper funding and media awareness, there was a drop of 70% in infant deaths after the Back to Sleep campaign. But this gave a clear message. The causes of perinatal death (stillbirth or death of a baby within the first week of life) are not clearly known so it’s much harder to formulate such a clear message.
Some risk factors are known: a mother’s body mass index of over 35, maternal age of over 35, women who smoke and are from areas of social deprivation or from some ethnic minority groups. But in some cases, none of these boxes are ticked and something still goes wrong.
Why isn’t more being done? The answer lies partly in funding. “When a pregnancy is high risk,” says Janet Scott, research and prevention manager at Sands, “the baby seldom dies. Most stillbirths happen in supposedly low-risk pregnancies. A dearth of research means that shockingly little is known about what is going wrong and why perfectly formed babies, ready to live outside the womb, die before they are born.”
Research needs funding. In the meantime, a lot more could be done to help those women reaching term, says Scott. “A slowing down of the growth of a baby is a warning sign associated with stillbirth,” she says. “Yet in the final third of a low-risk pregnancy Nice [National Institute for Health and Clinical Excellence] advises monitoring the baby’s wellbeing with a tape measure – and nothing else. Extraordinary.
“If things are going wrong, the baby first slows down growth to conserve energy,” explains Scott, “then its movements will slow down. Finally, the heart will start to fail.”
If a pregnant woman goes to hospital because she suspects a problem, the baby’s heart will be listened to first. “But the heart is the last to fail,” says Scott.
So, following the usual procedure, a woman who is concerned that something might be wrong could be sent home and hours later, her baby may die. Crucially, the hospital will have reassured her that all is OK and she may have overridden her instincts.
What would Scott advise a pregnant woman to do if she is worried? “She should go to the hospital straight away – this is key. Don’t hang around. Make sure that the people who are looking after you are familiar with the Royal College of Gynaecologists guidelines on foetal movement [rcog.org.uk/guidelines]. I would want a full clinical judgment by a doctor or midwife conversant with the latest guidelines and an assessment of all the risk factors. If it’s found that a woman needs a scan, the key is for the hospital to make scans available straight away, not just in office hours.”
Most unexplained stillbirths probably stem from the placenta. This is why the foetus can seem all right in the earlier stages, when it is smaller and making fewer demands on the placenta. But as it grows, something goes wrong. Research is needed to develop a blood test for biomarkers that will reveal if something might go wrong with the placenta later.
Placental research is probably key to finding a predictive tool but it is underfunded. Further, there is no legal requirement for perinatal postmortems. And while no one wants to force parents into having one, the process around consent may need to be worked on.
Next year, Sands starts work on a National Bereavement Care Pathway, to ensure parents are given standardised bereavement care. Sands is launching a standardised postmortem consent form in January. “The attitude of the consent taker is critical,” says Scott. “Midwives or doctors may not think it’s important, they may think it often doesn’t give you much information.” But that is wrong. “In about 70% of cases you get useful information and in about 40% of cases it can change the diagnosis [of why the baby died]. Even if nothing wrong is found, that’s useful information for any subsequent pregnancies.”
But the postmortem is only one part of it. This (anonymised) information needs to be pooled for research purposes, and it currently isn’t. “It’s not only the postmortem results that need to be looked at,” says Scott, “but the whole way the woman was cared for to see if something could have been done better.”
Statistics may shock but they don’t describe the human experience. “My story,” says Sue, “doesn’t change. It’s the same story. Matthew died. Not everyone wants to hear that. But unless they listen, nothing will change.”
This was first published in the Guardian Family section.