Sarah Hughes 

Let’s talk about stillbirth: a place for parents to share the agony and seek solace

When I lost my daughter at 35 weeks I found myself scouring the internet for help. Now a new website aims to offer practical and emotional support while improving care
  
  

Sarah Hughes at home in New York with her children in 2012.
Sarah Hughes at home in New York with her children in 2012. Photograph: Neil Wilder/The Observer

The thing that no one tells you when you have a stillbirth is how much you will want to talk to people about it. Just not the people you know. When my daughter Iris died at 35 weeks in January 2011, I wanted to shout her name to the world. Complete strangers would walk by and I’d be gripped with the mad urge (never acted on) to run after them and tell them that my baby had died. I would sit in coffee shops with her name running around my head, lie in bed at night thinking about her, walk down the icy New York streets hearing each footstep as a beat of her name.

Of course, I had people I could talk to. My husband, Kris, similarly hollowed out by grief, with whom I wept at night. My family, who flew to New York in the months after her death. My closest friends, who did the same. But somehow when they were there, waiting patiently for me to tell them how I felt, I didn’t want to speak about her. Instead, I chattered meaninglessly about books and films and TV shows, about my two living children and life in New York and how it went on.

I talked about Iris alone in the dark of the night and the early hours of the morning – and I did it online. For there is something about the anonymity of an internet forum that allows you to speak more honestly than you perhaps can to those who know you best. With friends and family there is always, however unintended, a sense of burden, that here you are banging on again about your dead baby. Even the most understanding of people don’t really want access to your darkest, bleakest, most unfiltered thoughts.

Online, however, in a place where everyone understands the fury and fear driving you through the day, it’s easier to talk, easier to mourn, easier, eventually, to start moving slowly forward. When things appear at their worst, there is something very comforting about talking to other people who truly understand what you are going through and who help you realise, that no matter what it feels like right now, you are not alone.

It is this desire for a wider conversation about baby loss that has led to the creation of a new website, Stillbirth Stories, which collects together audio interviews with parents and clinicians talking about their experiences, both historic (the earliest dates back to the 1960s) and recent. Supported by the Wellcome Trust, Stillbirth Stories aims to offer practical and emotional support for the bereaved while also raising awareness of how to improve care, and has been launched in time for Baby Loss Awareness Week, which starts on Monday.

Stillbirth Stories has been created by television producers Nicola Gibson and Emma Beck – both of whom have experienced baby loss – in conjunction with consultant obstetrician Professor Alexander Heazell, the clinical director of the Tommy’s Stillbirth Research Centre in St Mary’s Hospital, Manchester, and is backed by stillbirth charities Tommy’s and Sands as well as the International Stillbirth Alliance. What marks it out from those forums I once desperately searched through is its cohesiveness. Intended as a first port of call for those experiencing baby loss, its detailed, honest interviews – there are currently 14 on site – answer everything from how to deal with well-meaning family and friends to offering practical advice on postmortems and funeral planning.

“When my daughter Mary died seven years ago I just felt completely isolated – I would sit up at night desperately Googling to find information about other people’s experiences,” says Beck. “I had all these thoughts and feelings that I just couldn’t place in context … it often seemed very hard to take it all in.”

Gibson and Beck worked together on last year’s acclaimed BBC Radio 4 documentary, We Need to Talk about Stillbirth, during which they came up with the idea for a website that was both archive and resource. “Our feeling was that what was needed was a resource where you could listen to other parents who had been through the experience and learn how crucial decisions are made and how to cope with difficult moments,” says Beck.

“I had incredible support at the hospital but that’s not universal and we felt it was important that the site not only offered something for parents but also allowed clinicians to hear parents talk and thus understand how language and gestures can have a big impact on care.”

Gibson agrees. “It’s not something that happens and then you just get over it,” she says. “The stories featured on the website reveal the honesty and the tenacity of those who contributed. At the same time stillbirth happens to an awful lot of people and we want them to realise that they are not alone.”

For Jess and her partner Nat, whose son Leo died at 37 weeks and four days, and whose story is featured on the website, that honesty is crucial. “We all have days filled with sadness and grief and trauma that can be overpowering, but one of the reasons I agreed to share my story was that it offered the chance to do something positive in Leo’s name,” she says. “I would hope that the site reaches beyond those who have gone through this experience to allow those who haven’t to understand what it is like and how they might help.”

Shazia and Omar, whose son Mohammed was stillborn at 27 weeks, agree. “When we went through stillbirth I didn’t know very much about it at all,” Shazia says. “We were told that our baby had passed away and then I had to go home for two days before coming back in. Something like this site would have been really helpful during those two days because it was our first baby and we were devastated. We had no idea what to do. Knowing that other people had gone through this would have been some comfort during a terrible time.”

Nor is Stillbirth Stories’ importance limited to those who have experienced it. Ruth, a student midwife who lost her first daughter, Scarlett, at 32 weeks, shares her experience in the clinician’s section of the website and says that she became involved partially to inspire those on the medical side to talk and think more about stillbirth. “A site like this is hugely useful because the idea of something going wrong in birth still really scares a lot of students,” she says. “They worry that they won’t know how to deal with it, and of course nobody wants to deliver dead babies. What I hope is that in addition to helping clinicians understand how best to respond, it will also encourage women to speak up if they feel something is going wrong with their pregnancy.”

The website is hoping for further funding so that more stories can be added to the archive, building a more complete picture of the reality of stillbirth in the UK. “We’d like to enable people to upload their own stuff and do many more interviews but it’s dependent on if and how we get more funding,” says Gibson. “There is the sense that it could be an important resource but that will depend on the feedback we receive.”

Tom Ziessen, the senior national programmes adviser at the Wellcome Trust, agrees there is scope for expansion. “It’s important as a society to be willing to discuss how to deal with these experiences,” he says. “A site such as this doesn’t simply offer support, it also provides a training resource and may help uncover questions that will aid research.”

It is also much needed. In the six years since I lost Iris, the barriers around stillbirth have slowly begun to break down, thanks largely to the work of charities such as Sands and Tommy’s, and to initiatives such as Sands Memory Boxes. These are free of charge for bereaved parents and this month also became free to order for all healthcare professionals and providers, ensuring that the boxes will be more widely available at UK hospitals. Websites such as Stillbirth Stories can only help amplify this much-needed conversation, helping larger numbers talk openly about a subject formerly seen as distasteful or somehow taboo.

“The more we talk, the more we own our experiences and raise awareness, then the more research into the causes of stillbirth will be done,” says Beck. “If we can help shift this from a subject that isn’t talked about to one that everyone is widely aware of, then I will feel really proud.”

 

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