There’s never been a focus on stillbirth like we are currently seeing – historically it has always a taboo subject. Now, however, the Department of Health has committed itself to reducing the stillbirth rate and also to initiatives like the RCOG’s Each Baby Counts. The in-roads made by Tommy's researchers should also give us plenty of heart.
We can add to this the latest ONS data which shows a third consecutive annual drop in the stillbirth rate.
In spite of recent attention to stillbirth there's still plenty to do
However, despite all this momentum we continue to have one of the highest rates of stillbirth in the developed world. Needless to say there remains plenty still to do.
This is where the Stillbirth Priority Setting Partnership comes in to play. By defining where our focus and attention is needed most we can maximise the impact future research has. The Partnership has helped us to do this by pinning down the ten most important unanswered stillbirth research questions and will effectively act as a framework in the years to come.
Setting the priorities was an exhaustive process, taking 18 months to complete with input from doctors, midwives, parents, third sector organisations, funders and pathologists.
Shortlisting the priorities
Over 1,000 potential research questions were initially received which were then filtered down to a final shortlist of 25. A steering group, which included Dr Alex Heazell from our Manchester centre and myself, then met to agree on a top-ten list of research priorities (11 were eventually decided). Everyone was given time to hold the floor and put forward their case for research areas they were passionate about with a great deal of common ground established.
Having clinicians and parents in the same room could seem like a trivial detail but proved to be invaluable with the latter highlighting the importance of good bereavement care, as well as supportive antenatal care in subsequent pregnancies. Hearing from our supporters, we know what an immeasurable difference this can make, and to know that best care practice will now be closely scrutinised is very encouraging.
It brought parents and clinicians together
One of the best outcomes about this project is that it has brought parents and practitioners together. We had one parent who attended the session commenting:
“I’ve worn the hat of a bereaved parent for a very long time. People don’t realise that you take it to your grave. You can still touch and feel the pain. I naively thought that all I had to do was raise awareness and everyone would jump on board. It didn’t happen. When we merge science with the voices of parents we can make a difference - we’ve got something. I am grateful to have been able to contribute and I think there is hope for the future.”
Other priorities to be highlighted included the role of ultrasound assessment in reducing stillbirth and what current tests and procedures are effective for those women who are at risk. Tommy’s is currently involved in the AFFIRM study which is seeking to understand if a specific package of care for women who present with reduced fetal movements can make a difference.
The final priorities identified were:
- How can the structure and function of the placenta be assessed during pregnancy to detect potential problems and reduce the risk of stillbirth?
- Does ultrasound assessment of fetal growth in the third trimester reduce stillbirth?
- Do modifiable ‘lifestyle’ factors (e.g. diet, vitamin deficiency, obesity, sleep position, sleep apnoea, lifting and bending) cause or contribute to stillbirth?
- Which investigations identify a fetus which is at risk of stillbirth after a mother believes she has experienced reduced fetal movements?
- Can the wider use of existing tests and monitoring procedures, especially in later pregnancy, and the development and implementation of novel tests (biomarkers) in the mother or in early pregnancy, help prevent stillbirth?
- What causes stillbirth in normally grown babies?
- What is the most appropriate bereavement and post natal care for both parents following a stillbirth?
- Which antenatal care interventions are associated with a reduction in the number of stillbirths?
- Would empowering women to know about relevant evidence-based signs and symptoms and raise them with healthcare professionals reduce stillbirth?
- How can staff support women and their partners in subsequent pregnancies, using a holistic approach, to reduce anxiety, stress and any associated increased visits to healthcare settings?
- Why is the incidence of stillbirth in the UK higher than in other similar high-income countries and what lessons can we learn from them?
What happens next?
So what happens next with these research priorities? They’ll be a used as a point of reference for funders tasked with giving the green light to new research projects. Researchers know that by addressing these questions, they’ll stand a higher chance of receiving funding. By laying down the gauntlet and stating what our long term goals are we have much better chance of achieving them which ultimately stands us in better stead of reducing 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."