After a long labour, Nicole Regan-Smith was discharged from hospital on Christmas Day. She was expecting to bring home her first baby. Instead, in her hands, she held a bundle of leaflets about post-mortems and funerals.
Despite a normal pregnancy without any problems, when Nicole went into labour a few days earlier, the midwife couldn’t detect her baby’s heartbeat. During contractions, Nicole – a non-smoker, non-drinker, healthy woman deemed low-risk – was told her baby had died.
“Our world fell apart. The doctors quickly vacated the room, drew curtains around me and my husband and we just sobbed into each other’s arms,” she says.
The doctors told her she would have to deliver her baby and that a natural birth, rather than caesarean section, was better. Numb and in shock, Nicole was horrified by the prospect but managed to go through with it. After another three and a half hours of induced labour, Jessica was born. “We decided we didn’t want to see her,” says Nicole. “I didn’t know what she’d look like – I was scared,” she says.
The midwives immediately took Jessica away, cleaned her, dressed her in a baby grow, took pictures and prints of her hands and feet. They urged Nicole to see her; she’d regret it if she didn’t, they said. Nicole agreed and they brought Jessica back in, in a cold cot to preserve her body.
“She was beautiful, absolutely beautiful. She looked just like her dad, she had very long legs,” says Nicole. “We held her, and talked to her, and cuddled her. It felt like half an hour, but it was a couple of hours.”
Before Nicole and her husband Aaron returned to their home in Beckenham, his mother had swept up all of the baby’s belongings and cards, and shut them out of sight in a room. A month later was Jessica’s funeral. But the event did not bring closure for the couple; the post-mortem on Jessica’s death had come back as inconclusive.
“I feel like if we had an answer, we would’ve known what went wrong and what to look out for, for a future pregnancy. We didn’t, it was unanswered, so I completely blamed myself because I had no one else to blame,” says Nicole.
In England, there are about 665,000 babies born every year and over 3,000 stillbirths. That works out at about one stillbirth for every 200 babies born.
In the UK, it has become safer for women to deliver babies over the years, with stillborn and neonatal death rates dropping. Yet Nicole’s tragedy is still experienced by thousands of families a year. In England, there are about 665,000 babies born every year and over 3,000 stillbirths, defined as babies that are born dead after the 24th week of pregnancy. That works out at about one stillbirth for every 200 babies born. Shockingly, recent research shows that six in 10 term stillbirths could have potentially been prevented, if NICE (National Institute for Health and Care Excellence) guidelines had been followed.
In many other parts of the world, where women have limited access to healthcare, birth is dangerous for the mother and baby. Why then, in a developed, wealthy country, are so many women experiencing the deeply emotional trauma of losing their babies at birth?
There are myriad, complex reasons why stillbirth occurs. “The difficulty is you’re dealing with different physiology and different women,” says Louise Silverton, director of midwifery at the Royal College of Midwives. While stillbirth can be a result of a genetic or developmental deficiency, a large number of babies that die at birth appear to be healthy.
One third of stillborn babies are underweight, which could be linked to placental problems restricting oxygen to the baby, causing growth problems. Failure to pick this up during routine antenatal monitoring may lead to pregnancy complications being missed. This is what Nicole says happened with Jessica, who was underweight at 5lb 10oz when she was born.
Smoking, or being in a smoke-filled environment, during pregnancy increases the risk of stillbirth. Obesity and gestational diabetes, a disease developed during pregnancy, increase the chances of stillborns. Older mothers and women from certain ethnic minority groups are also more at risk. And regional variations in different NHS Trusts’ care have an impact too.
Despite its prevalence, stillbirth is “the ultimate taboo,” says Nicole, who is now 32. When she was speaking to midwives and reading up about her pregnancy in 2013, she said the issue of stillbirth was just a footnote; she learned more about the risks of having a baby with genetic disorders like sickle cell anaemia or Down’s syndrome, than a stillbirth, which is more common.
Reduced movement in the womb is a warning sign of stillbirth. Nicole says that if there was more awareness around the risks of stillbirth, women and their partners might be more likely to alert their doctor or midwife if they notice reduced movement.
“If people keep brushing it under the carpet and not talking about it, it won’t be improved,” she says.
Many of us find it hard to talk about death, which makes the tragedy of death at birth even more bewildering. “We struggle to find the language to use when a baby dies before they are born,” says Charlotte Bevan, senior research and prevention adviser at Sands, a stillbirth and neonatal death charity. “If we haven’t experienced it, and don’t know anyone who has, it’s impossible to know how to react.”
“These deaths are just as important as a child or infant death because they are devastating to parents. It’s not a failed pregnancy, it’s the death of a family member – that’s how families view it,” she says.
There is a real lack of understanding about the physiological mechanisms of pregnancy and birth. It’s as if we prefer to remain in the dark, cross our fingers and hope everything goes well.
Bevan says difficulties in talking about stillbirth stem, in part, from society’s wider inability to discuss women’s affairs, like menstruation or reproduction.
“It doesn’t come up in the workplace or even sometimes in people’s homes. If it does it’s in an unsupportive way, like ‘she’s hormonal’,” says Bevan. “I find it extraordinary that there is still so much mystery and lack of real understanding, among those of us outside the medical profession, about the physiological mechanisms of pregnancy and birth. It’s as if we prefer to remain in the dark, cross our fingers and hope everything goes well,” she adds.
Thankfully conversation around stillbirth is no longer confined to hushed hospital bereavement rooms. Years of campaigning, reports and research have helped place the issue squarely on the Department of Health’s agenda.
In November last year, the Government announced plans to reduce the number of stillbirths, neonatal and maternal deaths in England by 50% by 2030. This means halving the rate of stillbirths from 4.7 per 1,000 to 2.3 per 1,000. Last month, NHS England launched the Saving Babies’ Lives Care Bundle, which is series of practises that improve care and patient outcomes when performed together.
The guidance consists of four elements: reducing smoking in pregnancy; enhancing detection of fetal growth restriction; improving awareness of the importance of fetal movement and improving fetal monitoring during labour.
“The question is, is the NHS sufficiently resourced to actually do this?,” asks Silverton. While she says that resources are not an excuse, and we can do better, many of these practises will be difficult to implement with maternity services seriously overstretched and underfunded. For example, cuts to local authorities’ public health funding make it harder to get entire families to stop smoking, which ultimately helps the pregnant woman give up and allows the baby to develop in a smoke-free environment.
Antenatal care monitoring babies’ growth can be improved, despite resource challenges, says Silverton. But even still, midwives are stretched for time – a typical 10-minute antenatal appointment is not long enough, she says.
Having a better understanding of why babies die at birth – and properly investigating the cause of death and improving data collection – will help reduce stillbirths, says Bevan. This is one of the reasons the Netherlands has improved its birth rate four times faster than the UK, she says. “What we endlessly have with stillbirths is the shrugging shoulders attitude of ‘there is nothing we can do about it’,” she says.
Nicole’s second pregnancy was closely monitored, with scans every two weeks, consultant-led care and the same midwife throughout. She fell pregnant three-months after Jessica’s death. “I was still coping with my grief – I still am. It was very raw, coupled with not knowing why she died and pregnancy hormones. It was really difficult,” she says. “I was petrified history would repeat itself.”
Another factor making Nicole nervous was that her second baby was due around the same time of year as Jessica’s death. To avoid this situation, the baby was induced on the 18th of December. It wasn’t until five days later that Tristan was born on the 22nd, one year to the day that Jessica died.
“It turned the day of her death into a happy occasion too. We marked her birthday by lighting a candle, with a two-day old baby in our arms,” says Nicole.
“People who don’t know you think having a Christmas baby must be exciting. Yes, it’s happy because of Tristian, but there’s also an immense sadness and void in our lives too,” she says. “Christmas will never be the same for us.”
With Tristan now 15-months old, Nicole continues to find the strength to raise awareness around stillbirth, while working as a learning advisor at a consultancy firm in London.
“In everything I do, I feel it’s my daughter’s legacy,” says Nicole. “If she can’t go on living, I feel like I need to do this for her. It’s in her memory.”
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