Improving the care of mothers and babies
Around 200 new mothers and 5,000 babies die each year. Some of these deaths are avoidable and others provide invaluable insights into how we can improve the care of women, babies and families during pregnancy, childbirth, the newborn period and early childhood.
Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries (MBRRACE-UK) is the national programme responsible for conducting surveillance and investigating the causes of maternal deaths, stillbirths and infant deaths.
MBRRACE-UK provides the evidence that is needed to shape the delivery of safe, equitable, high quality, patient-centred maternal, newborn and infant health services. They cannot do this important work unless the law supports their continued access to timely and accurate confidential patient information relating to all maternal and infant deaths.
The following stories explain why this matters so much to so many families.
Prof Marian Knight, Professor of Maternal and Child Population Health and maternal lead for MBRRACE-UK
"Sharing data and information on maternal and child population health is vital if we are to continuously improve the services we provide to keep mothers and children safe.
"While it is uncommon for women to die during or after pregnancy in the UK, we must examine the care received by all women who have sadly died. Because these deaths are rare, in order to identify problems, see patterns, and make change, we must have timely and accurate data from every organisation about every death. Only then can see the full national picture of what needs to change, where and how.
"Analysis of this data shows us that women who have pre-existing medical conditions are at higher risk of dying in pregnancy. However, the data also helps inform us about what actions can be taken to reduce these risks.
"Each maternal death is investigated by MBRRACE-UK and our most recent report into maternal deaths identified an increase in deaths amongst women with epilepsy, from a condition known as ‘Sudden Unexpected Death in Epilepsy’ or SUDEP. Many of the women who died had issues associated with SUDEP, such as fits that were not well controlled, they have fits at night, or they did not have a review of their anti-epileptic medication to make sure they were the best prescription for them.
"By using the data collected about the circumstances of these tragic deaths, we have been able to make sure that pregnant women with epilepsy are able to discuss their risk of SUDEP, are able to review their medication, and can be given advice such as to not bathe or sleep alone while they are pregnant or new mothers.
"Data helps us keep pregnant women and their children safe and to prevent pregnant women from dying from epilepsy in the future."
Derek Richford, grandfather to Harry, who died shortly after his birth in 2017.
“My grandson died an avoidable death over three years ago. He suffered catastrophic brain damage after 30 hours of delays and complications during his birth. Our family can’t change what happened. We accept this. But we will not accept a loss of the learnings from this tragedy. We have campaigned tirelessly for an acknowledgment of where things went wrong for Harry, an otherwise totally healthy baby, and for change to ensure that other families do not have to suffer in the same way.
“To understand how and when care goes wrong, to identify where improvements can be made, to call out and support poor performing trusts. We need accurate and reliable data to be audited and analysed nationally to pick up variations indicating inequalities or substandard care. This data needs to be checked independently and validated so that organisations are accountable - not for the sake of assigning them blame (mistakes are a part of life), but for understanding what went wrong and putting it right. That is our duty to the children who have lost the chance to grow up and the parents left without them.
“MBRRACE supported us to find the answers that we needed over the last few years. The work that they continue to do also gives us hope that the learning from avoidable deaths will continue to drive change; change that we know can and will save lives.”
Jenny Taylor, mother to Maxine Ann Price, who died on 27 July 2020
“My daughter died 24 hours after my grandson was born by Caesarean section. She was 28 years of age and this was her first child. She had a healthy pregnancy. But after a 50 hour labour, she collapsed and died in my arms having only been home from hospital for 90 minutes. Baby Maximus lay on the bed where we were in the process of changing his nappy. I am now the sole carer and surrogate parent to him, my beautiful grandson.
“During the course of the past six-and-a-half months I have experienced what it’s like to be in the front line of a tragedy such as this. Grieving for my daughter has been agonising; not least because I still don’t have the answers I need to come to terms with her death.
“MBRRACE is a countrywide organisation, investigating maternal deaths across all cultures and races. They will be investigating my daughter’s death. It is vitally important that an organisation such as this has unrestricted access to data in order to carry out their research, compile statistics and write medical papers. How else are we to improve standards and regulations within our health system? How else do we raise awareness when medical mistakes are made? I feel that in my daughter’s case there are many unexplained factors and it is vital that these are investigated, researched and unbiased feedback provided in order that my daughter’s death not be in vain. It is important that we find ways to prevent these tragedies from happening again to another family, to another mother, to another baby. We owe it to the ones we have lost.”