The Long Read: Stillbirth – a silent tragedy
In East Kent, on average there will be a stillbirth or neonatal death every five days, that is 70 families every year devastated by the death of a baby, affecting whole families and whole communities. We are there for everyone, no matter how recent, or how long ago says a member of the East Kent Sands Charity
East Kent Sands is a local chairty who offer bereavement support groups and ‘befrienders’, who have had a similar experience and make themselves available to those who’ve just suffered the loss of a baby, for crucial communication and reassurance, either by phone or in person.
Theresa (not her real name) told us:“My pregnancy continued normally with the exception of some close monitoring at the hospital until. I awoke one morning when I was just over 26 weeks gestation,” she recalls “I was bleeding heavily and in extreme pain. I was rushed to hospital and was told our baby’s heartbeat could not be found.”
Theresa is one of around 15 women per day who lose their baby before, during or soon after childbirth. Nearly all of the volunteers who run East Kent Sands have experienced the death of a baby – and know how important support is for women like Theresa and the families facing such tragic circumstances. The East Kent Sands charity is a relatively new charity having been started in 2016 and yet in its time it has done some fantastic work, supporting families who have lost a child to stillbirth.
For parents affected by stillbirth, the experience of losing a baby is a grief like no other. Claire (not her real name) told us: “Losing my baby has simply changed my life…Both my husband and I have suffered with our mental health, it’s impacted our relationship, relationships with other people,” Claire explains. “Our grief will be lifelong, we are essentially grieving for a life that never came to be, grieving for the things that we will never get to experience – no first words, no first steps, no first day at school to name but a few. Christmases, birthdays, even family holidays become emotional as our family can never be complete.”
Such a devastating experience can leave families feeling isolated. There is still stigma associated with the loss of a baby, and many people find it hard to talk about for fear of saying the wrong thing. Yet an estimated 4.2 million women are living with depression associated with a previous stillbirth (page2), which is why it’s so important for those affected to feel able to talk about it.
“It’s essential to have access to support of this kind as you’re in such a vulnerable state, it’s upsetting to put it midly and you’re so emotionally raw that having someone to talk to who simply just understands just gives you a release. It was a lifeline for us,” Claire remembers.
Officially, a stillbirth is when a baby is born after at least 24 weeks of pregnancy, having never breathed or shown signs of life. Before that, the death is officially classed as a miscarriage (although of course, families may experience similar feelings of grief for a death at any stage of pregnancy).
There are many possible causes for a baby to be stillborn, although there is still a high proportion of unexplained stillbirths. Causes include infections in the mother, such as rubella or Lyme’s disease, that also affect the baby; bleeding before or during labour; diabetes; and fetal growth restriction (FGR), where a baby slows or stops growing inside the womb.
Every baby matters, and their loss sends ripples affecting not just parents and wider families, but also, for instance healthcare professionals who help these families, local communities too.
There are also known risk factors that increase the chance of a pregnancy ending in stillbirth. These include maternal obesity (which increases the risk to 1 in 100), smoking, drinking alcohol, drug misuse, and being over 35. But there are still unanswered questions around their loss for many families.
The latest figures show there were 3112 stillbirths recorded in the UK in 2016, and 696,271 live births. This means one out of every 225 births ended in stillbirth, or a rate of 4.4 per 1000. This is a slight improvement on previous years and the lowest rate since 1992. But it is still far too high and Sands charity, nationally, hopes to reduce this figure further through funding research and in raising awareness of some of the risk factors.
But despite the improvement, the UK still has much to do to: of high income countries, the UK is 24th out of 49, in terms of stillbirth rates, behind countries including Slovenia, Croatia and the Czech Republic. The country with the lowest rate of stillbirth was Iceland, which has a rate of just 1.3 per 1000.
Globally, 98% of stillbirths take place in poor and middle income countries, so we know that different levels of wealth, resources and access to good healthcare are contributing to these outcomes.
Among the richer countries, the large variation between stillbirth rates raises questions: with rates varying from 1.3 to 8.8 per 1000 across high-income countries, reductions to the UK’s relatively high rate should be possible. Nationally Sands aims, by 2020, to reduce the number of babies dying by at least 20%, and to fund research to better understand what causes these deaths.
Medical journal the Lancet has reported that substandard care contributes to 20-30% of all stillbirths. The report also found that women living under ‘adverse socioeconomic circumstances’ have twice the risk of having a stillborn child than more advantaged pregnant women. It suggests programmes should be available locally and nationally to address the inequalities.
Current figures show that within England, stillbirth rates rise along with deprivation levels, from a rate of 3.9 per 1000 births for the least deprived families up to 5.5 for the most deprived. It follows that in reducing deprivation levels, pregnancy outcome rates could also be improved.
There are also inequalities in the care available following the loss of a baby. A spokesperson from Sands, national charity explains, “One of our key aims at Sands is to ensure that all areas of the country receive the same level of care.” Claire realises she and her family were very fortunate with the level of care we received here in East Kent, however other areas of the country don’t have bereavement suites in hospitals, for example…It’s vital that parents receive the appropriate care and it shouldn’t be a postcode lottery as to whether you receive it.”
East Kent has one specialist bereavement suite, partly funded by East Kent Sands, at the Quen Elizabeth the Queen Mother Hospital (QEQM) in Margate. However, we understand another is due to open shortly at the William Harvey Hospital, in Ashford. Here East Kent families can and will be able to to spend precious time with their babies following death, a very important step in the grieving process.
Another mother we have spoken to, Deborah (not her real name), lost her second child, M, to an undiagnosed heart condition at one day old. “Our loss is always there. Even though we were lucky enough to go on and have another little boy, he does not replace M. I will always be a Mum to three, it’s just one of my children I did not get to keep.”
Deborah’s family managed to find some positives in their experience, “M has not changed our lives for the worse. He has made us as a family more compassionate and understanding. Because of him I have challenged myself more, for example I’ve done a skydive in his memory, taken up running. I have met some amazing people because of him.”
East Kent Sands attends around 50 fetes and fairs, community days and networking opportunities, every year, raising awareness of baby deaths and the support available to anyone affected by the death of a baby, no matter when or how long ago – it is so important that we encourage people to talk about this sometimes taboo subject.
The money raised goes towards improving the stillbirth units at the WHH or QEQM or the Ashford Baby Memorial Garden in Ashford town centre. “This has been designed to be open to anyone and we welcome families with their children, or people just wanting to eat their sandwich. The garden has a special area where we have over 210 name stones, remembering some of our babies. These are available at a one-off cost of just £40. Our beautiful garden is open to all and is situation within the main Memorial Park.“
Kind, articulate and thoroughly researched. Thank you for sharing this, as I was one of those 70 and East Kent Sands were brilliant. They saved and changed our lives.
60 years ago on August 1Xth 195X. I gave birth to a full time still born baby boy. We named him Steven John. He was born without legs, which we found 4 years later was through a thalidomide drug, which I took to help my chronic sickness.. The day he was born was the most horrific day of my life. I was not allowed to see him, and was told in a very cold and clinical manner, “your baby was born dead, but you are only young and can have more children. When I asked later on if I could bury him I was told, again very clinically , that he would be put in a unknown coffin with someone else . I was never allowed to know what happened to him, or where he ENDED UP. BURIAL OR CREMATION As I said lt was 60 years ago this August, and I think of him every single day. I WAS NEVER TOLD THE REASON HE DIED. Fortunately 3 years later I gave birth to perfect baby girl, which was wonderful, but didn,t stop the utter loss I felt for my son.
It is wonderful what you do now for grieving parents . Because I know the deep pain that a parent feels. A kind word and showing you care and allowing the mother to cry , makes such a huge difference. So from the bottom of my heart, I THANK YOU
A very interesting article which addresses many of the issues. Our East Kent Sands volunteers give as much support as we possibly can to anyone who needs it and it was lovey to read the comment above from someone whom we supported.
To J Mc, it was so sad reading your story but unfortunately so many peole have had similar experiences, particularly years ago. We are now more enlightened in the support the NHS and others offer, but there are so many people who feel cheated from being able to say ‘goodbye’ to their baby. We have a booklet ‘Long Ago Bereaved’ which might halp and we can sent out a copy to anyone, free of charge. Just email us at email@example.com and we will put a copy in the post.
In our Baby Memorial Garden in Ashford we have namestones for babies going back to the 1970’s and one from the 1960’s so this is something J Mc might be interested in. Many of the stones say ‘ Baby xxx’ where they were not given a name.
The article and comments also raise the issue of talking about baby loss. Sands is running a campaign called ‘Finding the Words’ trying to get people to say something – anything – to someone who has lost a baby. Most people feel awkward trying to find the ‘right’ words, but so often just saying ‘I’m sorry’ is enough to show you care.