Over 4000 babies are stillborn every year in the UK and many of these deaths remain unexplained. This causes untold heartbreak for the families who experience loss as well as anxiety in future pregnancies for the parents.
Tommy’s Stillbirth Research Centre, based in St Mary's hospital in Manchester, is dedicated to finding the causes of stillbirth and testing care approaches that will help to save babies’ lives and ease stress on the mother.
Do parents-to-be know enough about the risk of stillbirth?
Everyone is aware of pregnancy loss and it’s very common for parents to wait until their 12 week scan before telling friends and family the good news. However, once those 12 weeks have passed the risk of losing a baby isn’t talked about. One of the biggest challenges we face is making sure we talk about stillbirth enough so women know what warning signs to look out for, without causing unnecessary worry and anxiety. In a way, the taboo around stillbirth is similar to that surrounding cancer fifty years ago – without discussion of signs and symptoms, however small the chances were of developing it, people didn’t come forward with their symptoms early enough. For me, finding that balance and lifting that taboo is critical.
Stillbirth research is still in its early days. Why do you think it’s so far behind other types of research?
My belief is that for many years, there was a sense of fatalism about stillbirth – it was just seen as ‘one of those things’, and no one grabbed the nettle and asked why. More recently, organisations like Tommy’s have said enough is enough, but that still left us starting from basics. There’s no doubt that stillbirth research has a lot of catching up to do in comparison with other areas of medicine, and even other pregnancy complications. For example, there’s about 3000 research papers currently published about stillbirth, versus more than 30,000 on pre-eclampsia. As a further comparison, the numbers of papers on ovarian cancer for example are nearer 90,000 which just shows how far behind we are.
While we know that cancer is caused by cell mutation, stillbirth isn’t the result of one particular problem or disease, so we need to find the possible causes before we can develop tests and treatments. We know enough about cancer to think of ways of treating it, but with stillbirth the big breakthroughs we all so desperately want and are working towards are a way off yet.
So where do we start with stillbirth research and prevention?
We know that many preventable stillbirths are caused by growth restriction, which in turn is caused by a problem with the mother’s placenta. Here in Manchester, we’re focusing on research into the placenta among other things, and we’re starting with women whom we can identify as being at high-risk. We use advanced scanning techniques to examine the placenta and the aim is to develop a test which can show if a baby is at risk. At the moment, when we spot a baby that for example isn’t growing properly or a problem with the placenta, the solution is to find the right time to deliver the baby early. In 2013, we saw a 13% reduction in the number of stillbirths at Saint Mary’s Hospital in Manchester in comparison to the year before.
How will you use your findings to develop national approaches?
First, we’re hoping to find a test that works among women who are at high-risk, and roll that out across the region. 1 in 200 babies are stillborn, and some of them are born to women who have no risk factors at all. This means that finding a baby at risk in an otherwise completely healthy pregnancy is like finding a needle in a haystack. So our approach is to find a test that works among high-risk women first that can help shed light on testing women with an otherwise healthy pregnancy.
What’s one of your best success stories from working with patients?
I run the Rainbow Clinic for women who have had a previous stillbirth, which means they have an increased risk of stillbirth in their next pregnancy. Working with these women and their families is tremendously rewarding. They have been through such a traumatic experience and as a clinician, you are asking them to trust you and trust in antenatal care which may have previously let them down. That’s a really huge thing.
One of the families that stand out to me had a stillbirth in their fourth pregnancy, which came completely out of the blue. They already had three children, and each time the mum came for a scan, a different child came with her. Seeing the brothers and sisters come along with their mum brought home again and again how much stillbirth affected the whole family. They were a very close family and the children had lost their hopes and expectations for a little brother or sister, in a similar but different way to their parents. The pregnancy went well and they now have a little brother – I still have the thank you card.
If you were to change one thing in the next year, what would it be?
I’d want every stillbirth to be investigated, so that we can learn lessons from these tragedies – either lessons for improving care in future, or lessons that can help further our research.
The Tommy's Rainbow Clinic is part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester. It provides specialist care for women who have suffered a previous stillbirth or neonatal death.
The Placenta Clinic, run as part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester, is the largest placenta-focused research group in the world.
Tommy’s research centre at St Mary’s Hospital opened in 2001 and is now home to around 100 clinicians and scientists researching the causes of stillbirth.
"There have been times where I've felt like the only person going through this horrible situation (even though I know I'm not) and felt that people just don't know what to say. The more we talk about it the more we can support each other."
"When I crossed the finish line, I was the happiest man on earth. My finish time was 01:43:43; a New Guinness World Record for fastest half marathon in a straitjacket."
I know this is going to be a journey full of emotions, but I also know this is something I need to do. Not only for myself but my partner, my son and to show Tilly that she had a huge impact on the world in the short time she was here.
"Each month that went by provided another disappointment that we had not managed the one thing we hoped for most."