It was an honour when the Genesis Research Trust asked us to work on their media campaign for Baby Loss Awareness Week, after successfully working with the charity on a major national campaign earlier in the year on the 40th anniversary of IVF.
It involved interviewing case studies, professors and midwives, to ascertain the major news hooks and put the human story behind the stats.
Coverage included the Genesis Research Trust being featured in a release that went across the PA wire. The Metro ran a first person piece with our case study, Simon Glynn, looking at ‘forgotten fathers’, and the charity’s chair, Professor Winston and Simon and his wife Antonia, were asked onto Channel 5 News.
Below is the full story issued to media for 9 October, the start of Baby Loss Awareness Week.
Society and medical profession failing to tackle the scale, and psychological fall-out, of baby loss.
Need for Research
The UK’s biggest fertility research charity, Genesis Research Trust, warns the causes of baby loss are ‘under-researched’ with a ‘hidden psychological burden’ that’s not being adequately addressed.
Professor Robert Winston, Chair and Founder of Genesis Research Trust said:
“In over forty years of my professional life I have never felt more at a loss than when confronted by a grieving mother and father who have just seen their dead baby. Their grief is unbearable when I have had to explain that we do not know yet why it happened. Genesis Research has helped reduce the incidence of baby loss but it is still too common and our scientists work on improving our understanding of the cause of such tragedies.”
Speaking during Baby Loss Awareness Week, Professor Phillip Bennett, a Genesis Research Trustee and Director of the Institute of Reproductive and Developmental Biology at Imperial College London, said:
“Miscarriage is a very, very under-researched area, and yet it’s so common. In reality up to a fourth of conceptions will miscarry. We understand some of what causes miscarriage, but not all of what causes miscarriage. And we are currently not particularly good at looking after people at risk of miscarriage because we don’t understand enough. It carries a hidden psychological burden that we don’t really recognise.”
One in four parents will suffer baby loss from miscarriage, still birth and preterm births, with preterm birth being the biggest cause of the death of children under the age of five globally.
Professor Bennett said: “There is growing recognition of the importance of preterm birth because it doesn’t only cause babies to die, but it causes babies to have disability. Reducing the rates of preterm birth would have enormous impact on society, it would save society a lot of money, and it would make society a lot happier.”
“Solving the causes of preterm birth would be an enormous benefit worldwide, it is caused by many different things, so it will require a big integrated international effort to begin to reduce preterm birth rates.”
Psychological fall-out of baby loss
Research published last month* into the psychological impact of early pregnancy loss found evidence of significant depression, anxiety and post-traumatic stress symptoms in mothers, and their partners.
Men, Professor Bennett said, are often being the forgotten mourners of miscarriage and stillbirth: “I think we seriously underplay the effect that pregnancy loss – whether it be miscarriage, preterm or still birth – has upon male partners. Maybe it’s partly the fault of men for not opening up about it, but I think it’s largely the fault of medicine and society for not recognising it has a problem.”
He added: “Pregnancy loss often impacts the family in a negative way. If you have multiple miscarriages, it is much more likely for example that the family will break up.”
Irregular bereavement services
Jane Scott, a member of Genesis Research Trust’s community who founded the UK National Bereavement Midwife forum, agreed a lack of education and awareness compounded the psychological fall-out, alongside irregular bereavement services and funding from NHS Trusts.
She said: “Baby loss is probably the most devastating experience that any person may endure in their lives, evoking deep clinical trauma and we are still having to beg and borrow for good counselling. At the moment the service is very intermittent across the country, we need to bring every Trust up to a gold standard.”
Ms Scott said that many bereavement midwives were also exasperated by the lack of support and recognition that they receive.
“The psychological impact on us as midwives, dealing with death every day, is not acknowledged by any governing body. The psychological impact of the job should be factored in to our banding. If there are flaws in the care, the driving process for these families will be prolonged. “
Ms Scott said: “The 2016 Lancet report highlighted in no uncertain terms the global and societal impact of stillbirth. It affects people returning to work, extra visits to hospitals and GPS, depression, medication, relationship breakdown: people are unable to cope, this comes at undiscovered financial costs on services.”
Vivette Glover, Visiting Professor of Perinatal Psychobiology at Imperial College and director of Begin Before Birth course organised by Genesis Research Trust, highlights baby loss impacts on future pregnancies and mental health. She and her colleagues researched the effects of previous pregnancy loss on maternal depression and anxiety using data from over 13,000 pregnant women. The study found 35% of women who had experienced four or more losses had depression during the later stages of their next pregnancy.
Professor Glover said: “We believe that more attention needs to be given to the psychological state of women with a history of repeated miscarriage or stillbirth. Sadly, mental health problems frequently go undetected by the professionals who care for pregnant women. The good news is that both anxiety and depression can be treated – talking therapies can be effective in milder cases, while more severe cases might benefit from medications that are known to be safe in pregnancy.”
She said those caring for pregnant women should give mental health the ‘same priority’ as physical health.
Professor Bennett added: “Health in your life begins in the womb, and therefore improving the quality of life in the womb, will ultimately improve the quality of life throughout the nation. So it is important we think about that, and we improve the amount of funding that’s coming into pregnancy related research.”