Chris and his wife Danielle were delighted when she fell pregnant, and he recalls “getting to know” the baby in the womb. “I talked to him and played him music. I got stuff for him.” All seemed well and the couple had several scans until, at 25 weeks, Danielle became aware that the baby was not moving. When the couple went for a scan, they learned there was no heartbeat. Danielle vividly recalls the shock and anguish of being told her baby had died, and that she must give birth to her stillborn son, Mason.
The staff cleaned up the baby, dressed him in a tiny suit and took him to the parents in a moses basket. They spent the whole of the day with Mason until he was taken to have a postmortem done and then later moved to the funeral home. Danielle visited him every day. “He was just disintegrating in front of my eyes … But it didn’t make any difference to me. That was my little boy, I didn’t care what he looked like.”
Danielle and Chris had not even heard about stillbirth – the UK definition is a baby born with no signs of life at 24 or more weeks of gestation – when she became pregnant. They believed that once they had got past the vulnerable first three months, everything would be fine.
They are not alone, says Emma Beck, co-creator with Nicola Gibson of the audio archive Stillbirth Stories, which launches today. Stillbirth is still “shrouded in silence, even though it is about 10 times more common than cot death”, she says. Out of every 1,000 babies born in Britain, approximately 2.9 are stillborn. In 2015, nine babies were stillborn every day, placing Britain at 24th on a list of 49 high-income countries.
When Beck, whose daughter Mary was stillborn, did talk about her experience and heard those of other women, she realised how familiar and similar their emotions were, even when the stillbirths had been a long time ago. “The magnitude of the loss, the feelings of responsibility and guilt expressed by many mothers and the different ways mothers and fathers express their grief struck me,” she says.
This realisation led Beck, a television producer, and Gibson, who worked as a documentary producer and director for the BBC for 12 years, to create Stillbirth Stories, which is funded by Wellcome, as a resource to help parents share the experiences of others who have had a stillborn child. Here, mothers and fathers talk about getting pregnant, learning something was wrong and that they would lose their child. They describe giving birth and coping afterwards; the importance of caring support from clinicians and how significant it was to have a funeral ceremony. Their stories are intimate, profoundly moving and a hugely valuable insight into what stillbirth means. And they remove the taboo around the subject.
One couple who share their story via Stillbirth Stories are Sam and Martin, whose first pregnancy ended in miscarriage. They quickly conceived again, but their son, Guy, was stillborn at 25 weeks and five days. The following year, they had a second miscarriage. Their interviews are heart-rending but may be deeply comforting for someone experiencing a similar situation. Sam tells of her anxiety when she became pregnant the second time: “When I had the 12-week scan, I was waiting for them to say, ‘Oh no ... there’s no heartbeat.’ But he was waving his little hands on the screen. Then we felt safe.” However, at the 20-week scan, the couple were told that, although the organs were developing well, Guy was very small. At a scan three weeks later, it was discovered that fluid had been leaking and there was a poor blood flow from the placenta. Guy would almost certainly not survive.
The government has set a target to cut these deaths by 50% by 2030. About half of all stillbirths occur after 34 weeks, says Prof Alex Heazell, clinical director of Tommy’s Stillbirth Research Centre in St Mary’s Hospital, Manchester. He also led the Midlands and North of England Stillbirth Study, which recruited more than 1,000 women and looked at babies’ movement patterns and mothers’ sleep habits, diet and smoking. Few women realise that if they give up smoking before they are 16 weeks pregnant, their risk of stillbirth becomes the same as for a mother who never smoked.
Heazell’s role also includes overseeing the Manchester University NHS Foundation Trust’s Rainbow Clinic, which cares for women bereaved by stillbirth when they become pregnant again (there is evidence that they might be at higher risk of having a subsequent stillbirth). He has seen the importance of being aware from the moment there are signs that something is not right. So far, out of the 500 births since the clinic was set up, none has been stillborn. Heazell says: “About half of stillbirths occur after 34 weeks, meaning that these are babies who, if we knew about them earlier, could be expected to survive. A prevalent belief in society is that these babies were ‘not meant to be’, but that is certainly not true.”
Parents need to realise, he adds, how important it is that they get checked immediately if a baby seems not to be moving, so that a heart trace or ultrasound scan can be done.
At the Royal College of Obstetrics and Gynaecologists, vice-president Edward Morris describes the Each Baby Counts project, which looks at how different types of care can produce better outcomes for babies who may die towards the end of pregnancy. Meanwhile, an analysis of 512 stillbirths based on hospitals in five US states was published in March by the American College of Obstetricians and Gynaecologists. The study found that testing the placenta established cause in about two-thirds of stillbirths, and fetal autopsy helped in roughly 40% of cases. Genetic testing helped pinpoint a cause in 12% of cases.
While Stillbirth Stories recounts the experiences of couples, Gibson and Beck also thought it was important to hear how clinicians themselves cope with the emotional strain. As Morris says: “I challenge any obstetrician who diagnoses a baby dead in utero not to feel emotion. If you didn’t find these things affecting, you would need to reflect on whether it was the right work for you. But there is a reward in successfully managing your emotions.”
Jane has been a midwife for 17 years, and, for the last 14, has worked as a specialist bereavement midwife in an inner-London hospital. “I offer care as soon as we are aware that a baby has passed away,” she says. She talks parents through what to expect about delivery, and what happens afterwards. “I am a point of contact and an area of support. Some families need a lot, others don’t need so much. So I offer almost every family a different thing.”
The hardest part, she says, is walking into the room and not knowing what emotions to expect from a family. “I can be the ultimate professional in a room, and that doesn’t mean I don’t cry, but it’s not in an inappropriate sobbing way; it is kind of reflecting their grief rather than it being my own.” Afterwards, she says, she may sit in a chair and sob. “And that’s my personal kind of grief coming for them.”
The support Jane herself needs to do the work comes from professionals and colleagues who are also friends: “We talk a lot about it. I share an office with people who cry as much as I do during our conversations. If I didn’t have that support at work, it would be very difficult.”
Eileen, a junior registrar at an inner-London hospital, recalls the distress she felt with a very distraught mother who had just delivered: “The mother just kept asking why this had happened. And I had to give the honest answer, that we didn’t know. It’s so hard because you have to try and not get upset. And if you say the wrong thing in that moment, that can go on to shape how they view that whole event … which is petrifying.”
One of the hardest things can be asking parents who, understandably may feel very upset at the idea, whether they are happy for their child to have a postmortem, the results of which would go towards research. Sam and Martin recall struggling with the idea, but wanting any information possible about what might have been wrong with Guy. “We just kind of signed the form … I don’t remember it other than [thinking] we need to have this done. It was a massive thing for Guy to do … for his future siblings, really.”
Stillbirth Stories shows the different ways that families may grieve and suffer, but many are comforted by seeing the stillborn child as part of their family. Rick and Sarah say, as one: “Although the death of Lily Rose has taken our dream of a child living with us, we have been helped to celebrate that we had her, that she exists somewhere and that, whatever happens, we are parents.”
