Time to end baby death gaslighting?

Ask the HSE what the main risk factors for stillbirths are and they will tell you but ask how many avoidable baby deaths there have been in maternity units since 2013 and they won’t. They do know, but they just won’t tell you.

While they will accept “all elements of healthcare have adverse events”, they will always insist every effort is made to learn from these events and reduce the risk of recurrence.

But “every effort” so far does not, however, extend to acceding to any calls by maternity reform advocates to publicly announce a review of 50-plus baby death inquests since 2013.

The HSE’s determination to learn from these tragedies also does not extend to publicly acknowledging any attempt to find out what were the outcomes of all 655 baby deaths and injuries classed as Serious Reportable Events reported to the HSE’s National Incident Management System between 2016 and 2023.

No matter how many times the HSE or the Department of Health are asked, they - in effect - insist there is little or no point in reviewing either of these sources of information.

Perhaps the fact that they know exactly what is going on is the reason why they have refused, after all this reporter was last spring informed by a senior HSE executive “we know about all of these deaths”.

But if that is the case, why are babies still dying avoidable baby deaths in Ireland?

Perhaps the answer lies in a growing view among women that they are being gaslighted into believing they are among the only main reasons for baby deaths.

On the list of risk factors for stillbirths, for example, the HSE will say they are congenital anomalies (birth defects) in babies and things like the age, BMI, and the socioeconomic background of women themselves.

They will say they also centre around lifestyle choices such as drinking, smoking and taking drugs.

But what gets little attention in the panoply of health service information is the elephant in the room of Irish maternity services: human error.

Hardly a few months go by and another anguished mother is sobbing at the steps of either a Coroner’s Court or the High Court as they recount how what happened to her baby shouldn't have happened.

Like so many other since 2013, Lisa Duffy received an HSE apology for care failings and promises lessons would be learned.

Her apology came at her son Luke’s inquest in January 2022, which resulted in a verdict of medical misadventure.

He was stillborn in 2018 at Portlaoise Hospital, after - among other things - maternity nurses failed to spot Lisa was in labour.

Since experiencing Baby Luke’s “needless loss”, she has been at the forefront of maternity reform advocacy.

“You don’t realise the extent to which things can go wrong despite you and your baby being perfectly fit and healthy,” she recalls.

“You also just take it for granted that you will be cared for and trained staff will do their jobs properly.

“But bitter experience has shown me and so many other mums and dads that you can take nothing for granted.

“They will tell you there are lifestyle factors and there are these congenital anomalies but what they won’t talk about in any great detail are the mistakes that get made.

“Women are gaslighted into believing the main reasons are themselves or their babies.

“Yet, as I and so many others have discovered, human error is also a big cause not just of avoidable baby deaths but also birth injuries.”

It was with help from her and Safer Births Ireland co-founder Claire Cullen that research carried out by this reporter in 2023 led to the discovery that there have been at least 56 avoidable baby deaths in maternity units in less than a decade.

The research, based on a review of reports of inquests into baby deaths between 2013 and 2022, led to calls for a review of avoidable baby death.

The research threw up a number of factors common in cases, such as delayed deliveries, a lack of appropriate training and communications failures by staff.

The biggest single factor in 28 of the 56 deaths was related to cardiotocography (CTG) monitoring of babies’ hearts and the mothers’ contractions.

On December 21, 2023, the then health minister denied in an RTE interview there was any “trend” in relation to CTG playing a factor in baby deaths.

Stephen Donnelly’s response came weeks after the State Claims Agency itself stated, in a review of “Catastrophic Claims relating to Babies in Maternity Services”, that issues around CTG had indeed played a major factor in claims.

In its review of 80 catastrophic claims concluded between 2015 and 2019, it noted health staff “failed to interpret or recognise” abnormal CTG trace results in more than 60% of claims over the five-year period.

Research, again by the Irish Examiner, has discovered there have been five times more baby deaths and baby birth-related injuries reported to the HSE in 2023 compared to 2016.

The figures, released under Freedom of Information legislation, relate solely to near-term and term babies weighing more than 2,500g or 5.5lbs.

In total, there were 655 Serious Reportable Events (SREs) involving babies reported to the HSE between 2016 and 2023.

But the agency can’t say how many of the 655 baby deaths and birth injuries reported to its National Incident Management System resulted in a negative outcome. This is because they don’t collate the information centrally.

Instead they say each hospital is left with primary responsibility - “and accountability” - for the effective management of incidents.

Indeed, if you ask them why they can’t just ask each hospital what the outcomes were - the HSE will insist that it is not as simple as “sending around a few emails”.

Instead of going back over the SRE reports, the HSE instead launched a new initiative that will take years to complete.

This is the confidential inquiry the National Women and Infants Health Programme (NWIHP) launched last year into data about still and newborn baby deaths between 2021 and 2023.

Cases to be examined have been identified from existing perinatal death audit data from the National Perinatal Epidemiology Centre (NPEC), based in Cork.

When asked why start a new process instead of studying the outcomes of 655 baby deaths and baby injury related SREs, the message was the same: it's just not that simple.

England has a huge problem with preventable deaths, with a parliamentary report in 2021 openly acknowledging thousands of babies die preventable deaths in NHS maternity units every year.

Is it not time for the Irish health service to do the same, or is it just not that simple?