Sadly over 5700 babies are stillborn or die shortly after birth every year in the UK, which amounts to over 100 every week and UK figures are only just starting to decrease for the first time in 20 years. The UK has one of the highest stillbirth rates in the developed world and six years ago my son was one of these statistics.
In 2009 I was pregnant with my first baby. I had gestational diabetes so was classed as high risk but I didn't really understand what that meant and it also wasn't explained to me about the importance of monitoring my baby's movements. We had the nursery ready for his long awaited arrival and my mum was beyond excited to soon be welcoming her first grandchild into the world.
At 37 weeks pregnant, it was my last day at work and I popped out for a routine midwife appointment thinking I'd be joining my colleagues for my leaving do that afternoon. My midwife couldn't find my son's heartbeat and asked when I'd last felt him kick. I couldn't remember. Was it this morning? Last night? I wasn't in tune with his regular pattern so I wasn't sure when his movements had stopped or if they'd started to decrease in number.
At the hospital our worst fears were confirmed. "I'm so sorry, he's gone" the sonographer said. The pain and heartache can't be described. The shock lived within us for several months as we wanted to know why our baby boy was gone so soon.
Aidan's death is marked as unexplained on the post mortem results, as so many stillbirths are. We later discovered that weighing just over 5lb at term meant that Aidan was growth restricted which hadn't been picked up throughout my antenatal care.
Last week The Lancet 'Ending Preventable Stillbirths' series reported that the UK ranks 21st out of 186 countries in the world for stillbirth rates. This remains higher than many other high income countries. The research provides compelling evidence of the preventability of most stillbirths. However, this revelation isn't a new one as a similar stillbirth audit conducted 20 years ago also showed that nearly half of stillbirths were preventable if mothers received routine antenatal care. The Lancet also stated that the UK is making shockingly slow progress of reducing stillbirths due to a culture of 'fatalism, taboo and stigma'. We were told Aidan's death was "just one of those things" but I knew if his lack of growth had been picked up & I'd understood how to monitor his movements, he may be here today. That's why I set up the charity MAMA Academy, to raise awareness & save other babies lives.
Our Made to Measure campaign is calling all trusts to adopt the GAP programme by The Perinatal Institute to better detect growth restricted babies. It's award winning growth assessment training as well as producing customised growth charts has seen astonishing results. It's estimated that if all UK trusts run GAP, 1000 babies lives could be saved. Since launching our campaign, 85% of trusts are now signed up, including my local hospital. To me, Aidan's death was not in vain as now other babies lives can be saved.
MAMA Academy has just launched #stillBORN, a national campaign to share the stories of parents and their precious babies who were sadly stillborn. We aim to break the taboo of baby loss so that parents of stillborn babies finally have a voice to share their baby's story so that lessons can be learned for future maternity care. Every stillbirth matters as every baby still has a story. Our #stillBORN campaign not only highlights key pregnancy information to help mothers have a safer pregnancy, but also promotes the resources and programmes readily available to trusts to help them reduce stillbirth in their local area. We shall also be highlighting positive stories of survival, where the NHS has provided exceptional care, going above the call of duty to save babies lives. Our aim is for our NHS to be valued and appreciated so that good as well as bad decisions can be learnt from.
Many of the stories highlighted in our #stillBORN campaign show that mothers weren't listened too. Their concerns were dismissed and certain NICE guidelines for monitoring pregnancies were not adhered to. There is currently a 5,000 midwifery shortage in the UK and with plans to cut student grants in 2017, the shortage of midwives will soon be catastrophic. If midwives had more time to support mothers and their concerns adequately according to guidelines that are already in place, the UK may catch up with other developed countries. The taboo and stigma that 'nothing can be done to prevent stillbirths' needs to be broken. We also need to break the fear of discussing pregnancy complications and stillbirth risks with expectant mothers. Cot death declined massively due to mothers being made aware of risks. If mothers were empowered with information on stillbirth risks too, we may also see a decline.
The national audit programme MBRRACE-UK reported that only 1% of term stillbirths received accepted standards of review to understand what had happened. This is clearly unacceptable. The heartache of losing a child cannot be described as the grief stays with you forever. Parents need to know why their child died. As the majority of stillbirths are potentially preventable, it's vital that all trusts carry out an independent investigation to learn from potential lessons which may help to prevent a similar tragedy occurring in the future. SCOR software is available for trusts to use now and a new review tool is also being developed by Sands and the Department of Health entitled "Standardised Perinatal Morality Review Tool" which will be available later this year.
Caroline Tully, bereaved parent and founder of "Clara's Law" said: "We believe all stillbirths should be independently investigated and a coroner's inquest should be held in cases where a baby has died during delivery but signs of life were present". Please sign their petition.