I still light a candle for Tom, the son I never knew. The agony is endless
42 years ago BEL MOONEY had an agonising stillbirth. Now, backing women campaigning for greater understanding of this taboo subject, she says ...
The small room was stuffy, the quality of the short film we were viewing crackly and poor. Yet suddenly that little office at the Wellcome Trust in London had the solemnity of a sacred space. For there, two years ago I had the strange, heartbreaking experience of coming face to face — for the first time — with my 31-year-old self.
With clipped, nervous precision and anxious smiles, I replied to questions from the actress Sheila hancock about the recent stillbirth of my second son, Tom. The resulting short film was used in the training of midwives for many years — but I had never seen it until that day.
This moving encounter with the past happened after I was contacted by Nicola Gibson and emma Beck — former television producers who had themselves experienced stillbirth or the death of a child shortly after birth — to tell me about their important new project.
They were about to seek funding for a website called Stillbirth Stories — a resource that would use the power of personal testimony to explore the impact of this particular bereavement.
Their aim was to be awarded a grant from Wellcome, the global charitable foundation that funds research and projects in fields of science and health. But when they began searching for existing voices and experiences, they found just one audio/ visual document buried in the charity’s archive. And that was me.
Watching it, I relived the terrible 16-hour labour, the seeming helplessness of medical staff, the moment I was told my baby had died — and felt shocked and overwhelmed by remembered sorrow, although I held tears in check.
Afterwards I told Nicola and emma: ‘Oh, I feel so sorry for her’ — referring to myself at such a distance, so young and vulnerable in the first home my ex-husband and I ever bought. however, in the weeks that followed the screening, on-going sadness changed to frustration. Because if you had told me in 1975, when I wept so bitterly for my lost baby, that 42 years later there would still be widespread ignorance, even indifference, on the subject of stillbirth, I would have shaken my head in disbelief.
If a crystal ball had foretold that in 2015 Britain would rank 24th out of 49 high-income countries in the number of stillbirths (there are 3,600 stillbirths every year in the UK, and one in every 200 births ends in a stillbirth. It is 15 times more common than cot death); that Croatia, Poland and Czech Republic all have better stillbirth rates than UK; that mothers in Iceland are half as likely to suffer a stillbirth as we are . . . then I would surely have raised my fists and howled, not in grief, but in rage.
Too many people are inclined to shrug off such statistics, rationalising the dismal failure to understand and prevent stillbirth as an act of God, or an accident of fate. That’s what I told myself 42 years ago. And of course obstetricians and midwives do not have divine power to deliver healthy babies every time.
The process of childbirth is always perilous, even though medical advances have made it much safer than for our grandmothers. Nowadays foetal health can be monitored at every stage — can be, and should be — but what if it isn’t?
Shockingly, a Royal College of Obstetricians and Gynaecologists’ report from this year concluded that babies are dying needlessly because midwives fail to properly monitor heartbeats.
It is estimated up to threequarters of infants who were stillborn or suffered serious brain damage could have been born healthy with more thorough checks.
The Stillbirth and Neonatal Death Society (SANDS) points out that contrary to common perception, birth defects account for fewer than 10 per cent of stillbirths. There are well- documented risk factors for stillbirth
I imagine him as a friend to his brother and a delight to me
(such as smoking and obesity) but babies at highest risk are those with poor growth that’s not picked up. Too many pregnancies are thought to be ‘low risk’ — when in fact the baby is truly at risk. This is because we don’t fully understand the causes of stillbirth.
So today I ask the simple question: ‘Why?’
The new online audio resource, Stillbirth Stories, will be launched on Monday at the beginning of Baby Loss Awareness week. Though I’m quietly glad that my accidentally historic recording is there and will now be available to a wide audience, most moving to me is the deep sense of sharing that’s the whole point of this site. There are 21 interviews — carefully and compassionately recorded by emma Beck and Nicola Gibson — with parents and clinicians. They can be listened to in full or as short clips, searchable by theme, including: Being told your baby has died; deciding about a post-mortem; and pregnancy after loss.
This immensely valuable archive shows the pain of stillbirth can last for years. There’s a deeply moving universality in the responses of mothers and fathers who expected to hold their new baby, but find only emptiness in their arms.
Terrible feelings of guilt, anger, bewilderment, isolation and terrible, permanent grief echo throughout the website, in the testimonies of parents of all ages. My heart goes out especially to those who were not born when I spoke to Sheila hancock.
Take 31-year- old intensive care nurse Sam. She and her partner Martin live near Manchester and had suffered one miscarriage before their son Guy was stillborn on November 13 2015, at 25 weeks and 5 days. At the 20-week scan it was noticed Guy was small for gestational age — like my baby Tom.
A few weeks later the couple were told, because of a problem with the placenta, he would not survive. They were offered a termination, which they turned down, and Guy died naturally shortly afterwards. They have since experienced a second miscarriage.
Sam says: ‘ I want people to understand it’s much more common than they think. There’s over 300 babies stillborn, every month. I think people are not as aware of it because people don’t talk about it.
‘It’s not happy news. People are not going to be putting it out there like if their babies were born, sharing photos every day of things happening and their babies changing. So it’s just important to know you’re not on your own. It is happening and we really need to understand why and educate everybody that it’s real life. It can happen to anybody and for so many different reasons.’
An equally powerful interview with accountant Shazia makes a point I was always passionately keen to emphasise — that a stillborn child is a real person to the mother (and father) who bore him or her.
Shazia, 36, and her husband Omar, 37, a business development director, were introduced by their families in 2005 and married a year later. The couple moved to South London during their first pregnancy.
Shazia went to hospital when she noticed her baby had stopped moving. Mohammed was born on May 4, 2010, at 27 weeks gestation. Since then they’ve had three daughters.
Shazia says: ‘ When I was told Mohammed had died I felt like our whole world had been turned
upside down. We thought we were going to walk out of [hospital] one day with a baby, and [when] that wasn’t going to happen, i was in shock. When i was holding our first-born — sad doesn’t even describe the feeling — i couldn’t believe that this child was not with us. i was trying to cherish that moment because i was never going to have the moment again, to hold him and be that close to him.
‘There’s one photograph of me, my husband and mohammed and the look on our faces is quite different to when we’ve had our daughters. But i will cherish that photograph for ever. And one day, i am going to tell my daughters about him, because he is our firstborn. he is our son. And he is extremely important to us — and always will be.’
in 2015, one in every 227 babies delivered in the uK was stillborn — meaning a baby born with no signs of life after 24 weeks of pregnancy. stillbirth happens to be more common than down’s syndrome ( one in every 1,000 babies born will have down’s), but far less publicised.
more than a third of a million women living in the uK today have experienced a stillbirth; with an even greater number of bereaved fathers, family members and friends all affected by the experience — like ripples caused by a stone thrown into a pool.
i vividly remember my husband’s strength as he coped with my depression as well as his own grief. But i also learned a stillbirth in the family can destroy a marriage because of an inability to talk. it’s vital for everybody to understand the nature of this bereavement — which is birth and death in one.
But there is a taboo about the subject; sadly the experience of marjorie, 76, is still all too common. remembering the 1963 stillbirth of her first daughter, when she was 23, she said: ‘i blamed myself. When i got home it was hard because i found girls i was pregnant with at the same time — when i did start to go out — they would cross over, because they didn’t know what to say to me.
‘i didn’t talk about it. But i do think talking about it from day one helps — and it’s something i didn’t do. it’s scarred me for life.’
in the archive film i watch myself telling sheila hancock i do not want to ‘get over’ the loss of my son. Little did i know it would prove an impossibility anyway.
A 2011 study published in the British Journal of Psychiatry found the depression and anxiety experienced by women after a miscarriage or the stillbirth of a child may continue for years, even if they subsequently go on to give birth to a healthy baby.
At the time i was powerfully aware that i wanted to use my loss to do good — and indeed, writing and broadcasting about stillbirth in the years that followed did help to spread awareness. i played a small role in the foundation of the stillbirth society (now SANDS) and lectured to midwives . . . but ‘get over it?’ no — never.
Why has there been so little progress? There cannot be a politician who wouldn’t agree that for us to have one of the highest stillbirth rates in europe is unacceptable. despite excellent initiatives by research charity Tommy’s ( tommys.org) there simply isn’t enough work being done.
Tommy’s rejects the common notion that stillbirth is ‘ just nature’s way’. The charity funds four research centres in the uK to investigate causes and find treatments for miscarriage, stillbirth and premature birth, and aims to halve the number of babies that die during pregnancy or birth by 2030.
When my baby was stillborn there was no bereavement care at all. Things are better now — but still not good enough.
The standard of care in the uK varies widely between regions. At the last count, one in three Trusts and health Boards did not have a dedicated bereavement room in each maternity unit they cover — and bereavement care training is only mandatory in under half of nhs Trusts and health Boards.
This is not good enough. Too many parents lack the support offered by Jane (interviewed on stillbirth stories), a bereavement support midwife for 14 years, who explains her work: ‘i explore with them their feelings about seeing a baby, holding a baby, taking photographs, mementos, all those sorts of things.
‘i will guide them through processes such as funeral arrangements, testing whether they want post-mortem examinations. And then following on from that, it’s just being a point of contact and an area of support.’
For nicola gibson and emma Beck the hard work that began in 2015 has finally come to fruition — and i am proud to have played a tiny role along the way.
stillbirth stories is a considerable achievement that will help countless parents who want to know they are not alone.
in the past four decades i have talked to many young women as bewildered as i once was to see the empty cot, and told them not to be ashamed to cherish their dead babies in their hearts. Just as i do.
on november 26, his 42nd birthday, i shall light a candle as usual and wonder about the son i never saw, never held, but carried within me for nine months and will always love.
All the parents interviewed on the new website share with me a precious knowledge that the connection with our lost children remains unbreakable.
Yes, time heals and there may be other children to bless our lives — or there may not. Whatever happens, the tiny footprints still walk across our hearts, and dreams of imaginary futures return each birthday, leaving us wistful for the endless ‘might-have-beens’.
i cannot know what Tom would have been like, only imagining him as a friend for his big brother and a delight and support to me.
But this much i do know. First, that the department of health needs urgently to examine the entirely unsatisfactory ( even shameful) standards of maternity care in this country, and standardise bereavement services.
And second (the message of stillbirth stories) that the souls of those little lost spirits forever cry out through their parents’ mouths, telling the world that they were conceived, that they were real — and that they will always matter.
Birthdays remind us of the ‘might have beens’