Today is Pregnancy and Infant Loss Remembrance Day, an international day of remembrance that marks the end of Baby Loss Awareness Week in the UK, when thousands of bereaved parents, family members and friends across the world commemorate the too-brief lives of their babies. At 7pm tonight, people across the world will be lighting a candle in remembrance and leaving it to burn for at least an hour to create a global Wave of Light.
Eleven babies are stillborn and a further six die soon after their birth every single day in the UK, shattering the lives of expectant parents, their families and their friends.
Shockingly, rates of stillbirth in the UK have remained largely unchanged for the last 20 years, with around 4,000 deaths every year: that’s one stillbirth in every 200 births. Far from being an inevitable tragedy, a significant proportion of these deaths are potentially avoidable.
Contrary to common perception, major congenital anomalies (serious birth defects) account for fewer than 10% of stillbirths. Every year, more than 1,000 stillbirths occur when the baby is normally formed, considered low risk and at a time when the baby could survive outside the womb. If these babies could be delivered in time, lives could be saved.
One father told us how hard it was: “knowing that if they had induced [my wife] on her due date, our baby would probably be ok and screaming the house down”.
While neonatal deaths have fallen in the UK during the same period, the numbers of stillbirths and perinatal deaths related to events in labour have stayed at around 300 deaths a year – these deaths are possibly the most avoidable of all.
While there are well-documented risk factors for stillbirth, such as smoking, obesity and advanced maternal age, the majority of stillbirths happen in pregnancies that were considered to be low risk, until the baby died. In fact after 34 weeks of pregnancy babies at highest risk of stillbirth are those with poor growth that’s not picked up during pregnancy. These pregnancies are therefore thought to be ‘low risk’ when in fact they’re not.
Carla Pilsworth, 34, from Hertfordshire, had a ‘textbook’ pregnancy and was considered low risk with midwives picking up no problems throughout her pregnancy. Then in February 2011, at 37 and a half weeks Daisy stopped moving. Carla went to hospital where monitors detected Daisy’s very slow heartbeat. When it stopped she was rushed for an emergency C-section but it was too late and Daisy was stillborn.
“Her heart stopped beating and we heard the line go flat. I was rushed into theatre, I could hear them shouting, 'We’ve got to get the baby out!’ That was the last thing I heard. I don't remember how I felt right then - I remember waking up feeling empty... that emptiness stays with me today.
“When your baby dies, your world stops. To leave the hospital and return home without the baby you loved nurtured and carried for nine months is simply the worst thing any mother and father could face. The overwhelming grief, shattered dreams and devastation affects the whole family.”
In recent years successive governments have begun to respond to calls for action to implement changes in maternity care which could save lives. While the momentum is building to tackle and reduce avoidable deaths there is still much to do.
Several obstacles stand in the way, not least an all too common misconception that a stillbirth is somehow an unavoidable tragedy. Quality of antenatal care and care during childbirth can also vary hugely across the UK. All maternity units need to implement best practice in identifying and acting on problems in pregnancy and making sure everything possible is done to learn from deaths when they happen.
But staff need resources and commitment from those commissioning care and clinical leads in the maternity units to help them ensure the care every mum and baby receives is the best it can be. And where there are still gaps and disagreement in what will prevent deaths, more research is needed to demonstrate which diagnostic tools and interventions work best, and should be part of maternity guidance for all women.
Daisy’s mother Carla Pilsworth believes: “Antenatal care needs to improve in the UK. I would like to see the care offered to high risk pregnancies offered to first time mothers – this could prevent situations like mine, where a problem may have been identified by having a growth scan and possibly taking medication during pregnancy.... all of which will be offered to me in a subsequent pregnancy.”
Baby Loss Awareness Week offers families the opportunity to join with others and remember their babies, whether in public or private, anywhere in the world. When a baby dies, it is a cruel and devastating loss. It if happens around birth, then in the moment that you become a parent, you face every parent’s greatest fear: the death of their child. If it happens in the first year of life, often there has been little time to create cherished memories that could give some comfort. For each one of those babies, there are so many shattered lives: parents, siblings, grandparents, and wider family and friends are all affected, not to mention clinicians who care for parents.
By talking about their stories and raising awareness of a subject which remains traditionally taboo, we can work to bring about change so lives might be saved in the future.
Hannah Ward is Communications Manager at Sands
For further information about Baby Loss Awareness Week, visit http://www.babyloss-awareness.org/
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