New task force aims to reduce the number of babies injured at birth
High-level inquiry will examine cases of newborns who were brain damaged during the birth process, writes Maeve Sheehan
In the next fortnight, a high-ranking task force of civil servants and health officials will meet for the first time to consider how to reduce the number of babies who die or are brain damaged at birth.
Officials describe the gathering as "unparalleled". It will include officials from the State Claims Agency, the Department of Health, the HSE and patient representatives, reviewing the 70 or so cases each year of babies who are brain damaged during the birthing process and who are left with catastrophic disabilities as a result. Sometimes the trauma that causes the brain damage is unavoidable. But too often it is entirely avoidable.
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The human cost for the babies and their families is incalculable. The cost to the State can be counted in multiple millions of euros - one of the factors driving this new, high-powered group. The largest medical negligence insurance pay-outs are for the smallest cohort of babies who suffer lifelong disabilities as a result of harm caused to them at birth.
The National Neonatal Encephalopathy Action Group plans to identify the cases of "avoidable" harm, to ensure that they are fully and independently investigated to prevent them from happening again. Common mistakes will be the focus of targeted initiatives and new protocols to audit these cases will be introduced at the country's 19 maternity units.
Dr Peter McKenna, who will chair the new group, said: "The HSE and the State Claims Agency supported by the Department of Health have put together a high-level committee to look at this issue for the first time as a stand-alone problem in medical litigation."
"We've got a recognition at a high level that this warrants specific and focused attention," said Dr McKenna, who is clinical director of the HSE's National Women and Infants Health Programme.
Neonatal encephalopathy broadly describes brain damage at birth. It is commonly caused by oxygen deprivation, also by infection, stroke or other trauma. Hypoxia - or reduced oxygen to the brain - can cause long-term disability, cerebral palsy, can lead to developmental delays and, in severe cases, death. In avoidable cases, the same factors keep cropping up.
According to Dr McKenna, they include misinterpreting a baby's heartbeat, failing to escalate cases appropriately when things go wrong, mis-using oxytocin - a drug used for inducing labour, difficult forceps deliveries, failure to diagnose labour and consequent failure to monitor the baby, and missed growth retardation, which occurs when the foetus doesn't develop at a normal rate.
Ireland's maternity services compare well with other countries, and the kind of birth injury Peter McKenna is talking about is by no means unique to this country. But in the past, it has been covered up by hospitals. The brain damage suffered by baby Mark Molloy was at the heart of the scandal that erupted at the Midlands Regional Hospital maternity unit in Portlaoise.
The baby's foetal distress was missed, but his parents, Roisin and Mark Molloy - who was recently appointed to the HSE's board as patient representative - were lied to about his death. They were told he was "stillborn" when he was born alive. In Portiuncula's maternity unit, a report published last year found that of 18 cases of babies deprived of oxygen, serious management issues were identified in 10.
The question arises as to why the avoidable cases of encephalopathy are getting such high-level attention now?
The involvement of the State Claims Agency suggests that money has helped focus minds. Figures released to the TD Ann Rabbitte two months ago showed that medical negligence pay-outs have rocketed by 365pc in five years, totalling €832m in that period. According to Dr McKenna, 60pc to 70pc of awards relate to maternity claims, which works out at approximately €500m.
Dr McKenna credits a pioneering therapy called Neonatal Therapeutic Hypothermia or "head-cooling" - lowering the temperature of babies to improve their chances of surviving without brain damage. It is now standard treatment for newborns deprived of oxygen and is available in four maternity units in Ireland.
"What has changed in the last couple of years - what has given us the possibility of getting a handle on this problem that we couldn't possibly have got beforehand - is the introduction of neonatal hypothermia." The treatment provides the first national picture on the numbers of babies who suffer oxygen deprivation at birth.
"We know that around 70 babies per annum are 'cooled' and we know that it is out of this group that a large chunk of the compensation will arise. So, we feel it is appropriate that as a first step this should be the group that warrants special attention.
"Any baby that needs to be cooled, we would feel, needs to be investigated."
There is "no suggestion" that all 70 cases were arrived at by negligence, he said. "That is not the assumption. Many of these are unpredictable and unavoidable and they would have happened anywhere. But it is the small number in that 70 that will be worth scrutinising very closely," he said.
These are the "avoidable" ones.
The HSE has reached several multi-million euro settlements, most recently €17.5m to 13-year-old Arron Michael O'Keeffe, who was deprived of oxygen at birth and developed cerebral palsy. The HSE, the case alleged, failed to monitor him properly, and the alleged negligence managing his mother Helen's pregnancy led to "profound hypoxic insult" or oxygen deficiency. She said she would hand back the money in a heartbeat if it were possible for her son to get back what was taken from him in those hours before birth.
Dr McKenna mentioned the case, saying there is no quibble with the awards which pay for a lifetime of specialised care for the affected child.
"The only reason I mention money is it is a proxy for damage. This is not primarily to reduce financial pay-outs. It is to primarily to reduce damage to potentially normal children. We - as in we in this office - would regard it as the most serious insult the health service can deliver to a health service user.
"The only value that looking at the money is that that confirms that point of view," he said. "If there is that amount of money being paid out, it reflects the courts' view that there is that amount of damage being done."
How hospitals deal with adverse events has also varied from place to place.
Figures obtained by the Sunday Independent of maternity-related cases reviewed by hospital groups for 2016 and 2017 reveal that 37 babies died or were seriously disabled as a result of avoidable brain damage at birth.
Other figures show that 77 babies were treated for "head-cooling" in 2017 alone.
It is not clear why some cases were selected for review and others were not, nor was the HSE able to provide the outcome of these reviews. The figures for those years also record 22 cases of a perinatal death of a newborn that were reviewed as "serious reportable events" - in other words, baby deaths that could have been prevented.
A central part of the new task force's work is to ensure that all babies who are treated for head-cooling will be reviewed from now on.
Patients advocates welcomed the new task force. Stephen McMahon of the Irish Patients' Association, said: "Any initiative to reduce preventable deaths or injury to patients is to be welcomed, particularly to baby infants."
Families can struggle to access information when things go wrong. Krysia Lynch, of the Association for Improvement in Maternity Services, has pointed out that it is not easy for patients to get a hospital to conduct a formal review of adverse birth experiences, especially issues concerning staff behaviour.
Dr McKenna acknowledged that there have been inconsistencies across hospitals. The current system of reviewing adverse incidents is "ponderous", "lengthy" and has "got to the stage where patient representatives were advising patients that it was so long they were dubious as to how much the patient should contribute to it, because it may not be as helpful as the patient thought it would be".
New protocols are being rolled out across hospital groups to investigate serious incidents that occur in childbirth. Cases will be reviewed by a forum of maternity experts rather than hospital management, and by the hospital group rather than by the local hospital.
The Minister for Health, Simon Harris, has promised mandatory open disclosure before the end of the year, which means patients must be told when things go wrong.
The aim, said Dr McKenna, is that the outcomes for a normal pregnancy "should be the same in all 19 [maternity] units".
He said: "It's to try to slightly break down the concept, that 'this is my hospital and I'm doing it this particular way'. That's fine, if you are doing it in the right way. It's to get away from the fact that there are 19 empires, as it were. You can run it as well as you like - that's fine - but when things go wrong you have still got to be subject to scrutiny."