If you lose a baby, those around you need to understand that honesty is key

Clark-Coates's idea was a new kind of service, the most recent of which have been held at Glasgow Cathedral and St Andrew's Cathedral in Inverness.  There are still traditional songs and readings at the services – the kind you might find at other memorial events – but then something different happens. Down the aisles, one by one, the congregation pass round a hand bell and ring it for each child they have lost. Some families ring the bell once; others more times. Zoe remembers one particular woman ringing the bell 14 times: 14 chimes for 14 lost babies.

Ringing the handbells is always a particularly moving part of the Saying Goodbye services, says Clark-Coates. Not only are relatives and friends doing something significant for the baby or babies they have lost, but everybody around them in the cathedral can hear the bells ringing – it is a personal and public act, and a reminder of how significant the loss to miscarriage, still birth and neonatal death is for anyone it affects.

Zoe Clark-Coates knows it from personal experience, and established The Mariposa Trust, which organises the Saying Goodbye services, after losing five unborn children. Now she is a campaigner, counsellor, advisor and activist, caring, through her charity, for grieving families, but also actively working to make us better at understanding miscarriage and supporting those who have experienced it. This week, she will be taking part in Baby Loss Awareness Week, but she is also pushing a change to UK law through Westminster which she believes will make a significant difference to the support – or lack of support – which families experience. There's a lot to do, she says.

One of the greatest problems that needs tackling, she says, is the lack of consistency in care, as well as the taboo which still shrouds miscarriage and prevents many of us speaking about the subject – to friends, within families, and even within relationships. Clark-Coates believes one of the problems is the "rule" which says that, if a woman falls pregnant, she shouldn't tell anyone about it until 12 weeks.

"It’s down to a couple whether they talk about their pregnancy," says Clark-Coates. "But do I think the 12-week rule is unhelpful and reinforces the taboo? Absolutely. It says it within the words: “don’t tell anybody until 12 weeks in case you lose the baby” and that means don’t talk about it if you do lose the baby. As soon as you’re told ‘don’t tell anybody in case you lose the baby’ it’s telling the world ‘don’t talk about your loss’ – it’s really unhelpful when talking is key."

Clark-Coates knows herself how important talking is – as well as the damage not talking can do. She was 32 when she and her husband Andy decided they would like to have children and within months she was pregnant. But then the bleeding started and she had her first miscarriage. She could deal with the physical symptoms, she says, but put the emotions in a box – she and Andy told no one about the baby and barely talked about it between themselves.

The second time they suffered a miscarriage, a few months later, the emotion was just as sharp and agonising, and it was the same the third time. By the fourth time she had fallen pregnant, says Clark-Coates, she had become used to feeling scared, living from appointment to appointment, all the time gripped by anxiety. Happily, though, the fourth pregnancy did not end in miscarriage and she gave birth to her daughter Esme.

Zoe and her husband were then to suffer two further miscarriages before Esme's sister Bronte was born and it was when Bronte was six months old that Zoe decided that she wanted to use her background in PR and event management to help others who experienced similar loss. She also wanted to change attitudes to miscarriage.

"Most parents will tell you the hardest part when you lose a child is the fact that so many people will almost talk about your baby like it wasn’t a baby – it was a medical incident, it was the loss of a foetus, not the loss of a child," she says. "And as a parent you want to scream to the world ‘no this is my child’ and you spend so much time defending your baby’s worth. You end up fighting to say to everybody around you, my baby truly matters and my grief matters and because of that, you’re not able to fully go through the grieving process."

Clark-Coates' alternative approach – for those who have experienced a miscarriage and their friends and relatives – is expressed compassionately, sensitively, but firmly. For example, putting a face on and pretending everything is OK is not a good idea, she says.

"Being honest is key and you need those around you to understand that," she says. "I made the very big choice to be a 100 per cent real – I knew I could not hide what I’d gone through, I could not pretend it wasn’t happening and by just giving friends and family the ability to say ‘yeah, I support you however sad you’re feeling’ that was really empowering for me. Trying to hide something so huge as grief or loss is damaging to your soul."

But what about those friends and family? How do they know what to say, what not to say, and when to say it? "What people need to do is not be afraid to talk about it – that’s the most important thing. When people are scared to talk about loss, it makes it even more of a taboo subject. But it means that parents start to feel uncomfortable talking about it because of the response of those around them when actually people want to talk about their experience – they need to talk about it. They certainly want their baby to be recognised and honoured and so often when people say to me ‘I’m frightened of triggering pain by asking them how they’re doing.” I always say ‘if somebody has dealt with their loss, if somebody has processed their grief, they’re not going to be upset by talking about it. And if they haven’t processed it, they’re going to welcome the opportunity to talk."

One of the problems, though, can be the cliches of grief – cliches that women who have experienced miscarriage will have heard a million times: ‘at least you can get pregnant’ or ‘it will happen soon’. "We always say to people ‘avoid cliches’ just make it very clear to people that you’re willing to listen," says Clark-Coates.

Clark-Coates has also some more surprising advice. Speak to women who have experienced miscarriage and they will often say that they've been on the receiving end of an insensitive friend who just doesn't get it, or even tries to dismiss the grief. Zoe Clark-Coates's advice is that sometimes the only thing to do is to ditch the friend.

"So many people think a friend is always for life and that, in a perfect scenario, is the case," she says. "But if there’s a friend who is consistently causing you pain, maybe they’re not a great friend anymore. Or maybe they’re a friend to just go out with but not to have deep and meaningful conversations with – so many people will come to us and say ‘every time I sit down and talk about my baby, they belittle my baby’s existence or they tell me I’m being stupid' and you need to get to a point whether you either move away from that friendship or you make a decision not to keep talking about your baby with that person because all you’re doing is allowing someone to pour salt into the wounds. Pick your friends wisely who you share with."

Clark-Coates says the emotional and practical support offered by her charity can also help people through their grief, although it does not stop there: she is currently campaigning for a new law that she believes could help ease parents' pain and is watching the law progress through the House of Lords.

"One of the things that the thousands of people we support every week say to us is that a lack of recognition that their baby even existed just compounds their grief – they want something that they can keep in their family records to say my baby truly existed rather than it dying in their medical records – that’s the only place their baby existed and they want something that can go into their records to say to every generation ‘we had other children that didn’t make it.’"

Clark-Coates's answer is a loss certificate, which would be available UK-wide to people who have had a confirmed pregnancy, and she is hopeful that it will become law. She is also hopeful that her work, and in particular the Saying Goodbye services, will bring about a more subtle change to the way we think and talk about pregnancy loss.

"One of the things you feel most when you go through loss is loneliness and isolation and like you’re the only person in the world that it’s happened to," she says. "Our services help people feel like they are not alone but they also give them space and time to honour the baby’s life. So many people in society often forget a baby even existed."

For more information about The Mariposa Trust, visit sayinggoodbye.org. Zoe Clark-Coates' new book Saying Goodbye is published by David Cook at £12.99. Baby Loss Awareness Week runs until Sunday - for more information, see babyloss-awareness.org