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Ruth and Kazu Toyoshima hold their six-day-old daughter Ellie minutes before her death. Ellie suffered devastating brain damage during her delivery at Hutt Hospital. Photo/Jane Nelson/Heartfelt

Losing Ellie: 'I hope no other family has to go through what we went through'

Is the death of an otherwise healthy newborn when a delivery went wrong, in an understaffed and mismanaged hospital unit, emblematic of wider problems in the country’s maternity services? Donna Chisholm reports.

Ellie Toyoshima, who took seven years to be conceived, lived for just six days. She was perfect, from the thick black hair on her head to the pearl-sized toes on her feet. Ellie died because her brain was starved of oxygen during labour and the damage that resulted was so profound doctors said she would spend the rest of her life on a ventilator. It was damage that could, and should, have been avoided.

Ellie had the misfortune to be born in a hospital maternity unit that was under-staffed and equipped with monitoring machines that weren’t working properly. She might have survived, even then, had her midwife and a hospital obstetrician not failed her in a number of ways. The midwife did not take measurements of the mother and unborn child’s health at crucial times, was unsure how to interpret problematic results and delayed calling for help at a critical time. The obstetrician failed to do the proper tests, was also confused about the significance of fetal heart rate readings and did not intervene quickly enough to safely deliver her by caesarean section.

For five days, after the disaster of her delivery and transfer into intensive care but before the devastating results of the MRI scan on her brain, Ellie’s parents, Ruth and Kazu Toyoshima, hoped for the best. “We knew it was potentially bad but we didn’t know how bad,” says Ruth. “The scan showed she was pretty much brain-dead. We thought the most humane and best thing for her would be to die, because that was no life for her to live.”

After Ellie was taken off life support, the Toyoshimas held their dying child, conceived by IVF after all those excruciating years of “unexplained infertility”, until she took her last breath an hour or so later. “She was precious to us from the moment she was conceived,” Ruth says. “Words can’t describe how happy we were to have her.”

The couple cocooned baby Ellie with love after she was taken off life support. A brain scan showed damage so profound she would have spent the rest of her life on a ventilator. “We thought the most humane and best thing for her would be to die, because that was no life for her to live,” says her mother, Ruth. Photo/Jane Nelson/Heartfelt

In December 2019, more than three years after Ellie’s birth, the Health and Disability Commissioner (HDC) has released a scathing report into her death, finding the Hutt Valley District Health Board failed to ensure its staff were supported well enough to provide safe and appropriate care. It found the obstetrician in breach of the Code of Patient Rights, and made adverse comment about the midwife’s performance.

Ellie’s death is one of four complaints the HDC has been considering recently related to maternity services at the DHB. In February, it found the health board, a midwife and doctors all failed another pregnant woman whose baby was stillborn in 2015. In June, an external review commissioned by the DHB’s chief medical officer found chronic staffing deficiencies in its women’s health services, serious job dissatisfaction among midwives and a reliance on midwifery managers to work clinically – as happened the night Ellie was born.

Neither the obstetrician nor midwife involved in Ellie’s care will be referred for disciplinary action, although the HDC recommended the Medical Council consider whether to review the obstetrician’s competence. The commissioner made a raft of recommendations to the Hutt Valley DHB, including directives to significantly increase midwifery staffing, identify and address critical equipment deficiencies immediately, improve clinical staff training in maternity care and audit the records of all babies who, like Ellie, were transferred to Wellington Hospital after birth.

For Ellie’s parents, the DHB has to do just one thing: write to them saying it is sorry. Ruth would have liked to see disciplinary action taken against both the obstetrician and the midwife. “I’m really disappointed they [HDC] think that after three years and a dead baby, it’s okay just to give a grieving family a letter.”

She spoke to North & South in mid-November, a day after around 100 midwives, parents and politicians attended a protest meeting in Petone over what they called an ongoing emergency at the DHB’s maternity unit. “Nothing has really changed since the death of our baby.”

It’s why they are going public with Ellie’s story. “We hope her legacy is that she changes the whole maternity system. If that’s what she died for, I hope no other family has to go through what we went through,” says Ruth. But it will happen again, she says, if the lessons from Ellie’s birth are not learned, and the system and personnel failures that caused her death aren’t fixed.

Ruth and Kazu Toyoshima say they hoped for the best for Ellie before the results of the brain scan. Photo/Supplied
The themes identified in the HDC report into Ellie’s death are common in similar cases nationwide and are not confined to just one DHB. In a wide-ranging story about the country’s maternity services published in North & South in 2011, I wrote this:

“Our investigation encountered recurring themes in problem births:

  • Dangerous delays in diagnosis and action when pregnancy or labour departs from the normal.
  • Confusion between midwives and doctors over who is in charge when responsibility for care is transferred.
  • Unexpected complications occurring at home or in primary birthing units many kilometres from high-tech assistance.
  • The unrealistic expectation that because a woman is young and healthy, she will therefore have an uneventful delivery.”

Like many women in this current era of shortages in community midwives, Ruth Toyoshima – then a 32-year-old early childhood education teacher – struggled to find a lead maternity carer (LMC) when she became pregnant in 2015. “I phoned around to see whoever was available and it was very difficult. We were quite desperate. All the people recommended by friends were completely booked out. I pretty much went with the last people available.”

By the time her waters broke at 6.30am on 15 July 2016, Toyoshima was one week overdue, but the labour did not depart significantly from normal until 8.20pm, when she had been at Hutt Hospital for more than four hours. It was then that the LMC midwife first detected a significant slowing in the fetal heart rate. She rang the emergency bell, which summoned two hospital midwives and an obstetric registrar. The registrar applied a fetal scalp electrode to monitor the heart rate on a cardiotocograph (CTG). This had previously been recorded by an external CTG monitor. The midwife told the HDC she had significant concerns then about the wellbeing of the baby, given the earlier CTG reading, but was unsure how to interpret it because it had then returned to the baseline rate and she had “never seen hyper-variability before”. She asked that a consultant obstetrician who was not on site be called in to take a fetal blood sample.

The obstetrician told the HDC that when she arrived at 9.10pm, a hospital midwife, who had been working as associate clinical midwife manager that morning but was working clinically on the evening shift because of a staffing shortage, was “very positive that a normal vaginal delivery could be accomplished and was keen to give Mrs Toyoshima a chance at achieving this”. The obstetrician said she initially offered Ruth Toyoshima the option of a caesarean at that point, but the midwives felt she was making “adequate progress” and offered her more time to push.

The obstetrician said she was not aware hyper-variability in CTG tracing results indicated fetal distress, and did not take a fetal blood sample because there were issues with the hospital’s lactate monitoring machines. (Lactate concentrations in the fetal blood can indicate oxygenation status in the baby.) She told the HDC she interpreted the CTG as “non-reassuring but not hypoxic because it had returned to the baseline rate”. The Toyoshimas told the HDC the obstetrician did not seem comfortable with the midwives wanting to continue with a vaginal delivery, but they could not recall her offering a caesarean. In its findings, the HDC said the obstetrician also failed to identify, from the CTG, uterine hyper-stimulation – five or more contractions occurring in a 10-minute period.

Those crucial failures were to cost Ellie Toyoshima her life, as her mother laboured on until 9.55pm, when the midwife detected a clear deterioration in the CTG trace. She left to try to locate the obstetrician in an office nearby, but found it empty because the obstetrician had been called to the emergency department. “I returned to Mrs Toyoshima’s room, but wanted to get help. In retrospect, I should have rung the emergency bell again at this time.” At 10.03pm, she paged the obstetrics and gynaecology team, who arrived two minutes later. The obstetrician said she did not start treatment to relax the uterus to reduce the stress on the baby caused by contractions because “it was not routine practice at Hutt Hospital at the time of this case and no guideline, or medication, was available”. With the labour ward staffing “minimal”, and delivery now so urgent, the obstetrician said she pushed Ruth’s bed to theatre herself.

Ellie Toyoshima was delivered at 10.34pm and had to be resuscitated by a senior house officer. The house officer asked a Special Care Baby Unit nurse to attend, but no one was available because “it was in the middle of handover”. A paediatrician and another senior house officer arrived 30 minutes later and took over the resuscitation. By phone, a Wellington Hospital neonatologist advised that Ellie should be intubated, but efforts to do so failed because of the baby’s strong cough reflex. She was transferred by ambulance to Wellington Hospital at 2.30am, without her parents. Realising he could not be with both the woman and the child he loved, says Kazu Toyoshima, was one of the hardest moments of all.

In retrospect, he says, the couple felt ill-prepared by the antenatal classes they attended about the potential risks of labour and childbirth, and had no advance plan should anything go wrong. “Through all the courses we went to, it felt quite negative towards caesareans, that going with the midwife and doing it the natural way was the best way, even doing it at home.”

After Ellie’s birth, he says, the doctor and midwife told them “there was nothing else they could have done anyway. I thought something horrible happened and none of it is their fault. That it was just unlucky it happened to us.”

He says that without encouragement from his sister-in-law, and the help and guidance of maternity advocate Jenn Hooper, co-founder of Action to Improve Maternity (AIM), a voluntary advocacy group that assists families who have had births go wrong, they would never have found out what really happened, or been able to navigate the HDC and ACC processes. “I think it’s horrible that parents who lose their child have to fight to find out what just happened. It’s so hard for parents to find out the truth. I do believe accidents happen and people make mistakes, but I don’t want parents to go through what we went through. If people really want to improve the system, why is it so hard to find out? It seems no one is learning from the mistakes if it is so difficult to find the truth.”

He says the standard of care Ellie received in Wellington Hospital’s neo-natal intensive care unit was exemplary.

This beautiful image of Ellie was taken by Jane Nelson of Heartfelt, a volunteer group of professional photographers who create pictorial records of stillborn or premature babies, and of ill infants in the hospital’s Neonatal Intensive Care Unit. Photo/Jane Nelson/Heartfelt
In a November 2017 briefing paper to the incoming Minister of Health, Health and Disability Commissioner Anthony Hill – whose deputy Rose Wall investigated the Toyoshima case – said maternity and midwifery care was one of five “service areas” it was currently focused on as a result of issues raised in complaints. He said a number of recent investigations about standards of care and informed consent had identified issues around midwives’ adherence to guidelines for referrals to obstetric and medical services. Other common issues included:
  • Fetal monitoring/interpretation.
  • A lack of situational awareness.
  • Failure to identify fetal distress.
  • Failure to escalate care to senior staff.
  • Inadequate communication between lead maternity carers and specialist care during transfers of care.

In a study published in 2015 of brain damage in newborns following asphyxia, Dr Lynn Sadler, a senior research fellow in obstetrics and gynaecology at the University of Auckland, reported on a multidisciplinary review of the clinical records of 83 babies who had suffered varying degrees of neonatal encephalopathy (NE) in 2010-2011. There were contributory factors in 84% of cases, most commonly related to personnel (76%), with 55% considered to be potentially avoidable. The most frequently identified theme related to the use and interpretation of cardiotocography in labour – the same issue that occurred in Ellie Toyoshima’s birth.

In a second paper published in February 2019, which examined cases where there had been an acute event such as placental abruption, or the baby becoming stuck in the birth canal, the severity of outcome was potentially avoidable in 66% of cases. Sadler wrote that rigorous review of such cases for quality improvement was seldom reported. “There is significant potential to improve quality and safety in acute peri partum care to reduce the risk of neonatal encephalopathy.”

Jenn Hooper, who has campaigned for safer maternity care since her daughter Charley was born profoundly brain-damaged in 2005, says of the roughly 900 families AIM has helped over the past decade, the causes and “red flags” are largely unchanged, suggesting maternity care isn’t improving. “It’s like Groundhog Day,” she says. “It’s things like normalising the abnormal. Saying, ‘This is a bit weird, but it’s probably going to be all right because it normally is.’ Or ‘Babies come when they’re ready’ when they’re late… Failing to recognise when something is going wrong comes up time and again in our cases, and so does failing to portray a sense of urgency. If the issues are portrayed to the doctor in a humdrum way, instead of ‘We’ve got a woman in big trouble here,’ it won’t be taken as seriously.”

She says referral guidelines, which are meant to determine when midwives seek specialist help, aren’t followed because they aren’t treated as mandatory. “It’s not that they don’t know it is best practice, it is that they consciously disregard them.”

In 2017, Hooper was appointed to the Accident Compensation Corporation-facilitated Neonatal Encephalopathy Taskforce, which aims to reduce NE cases by 10% by 2021. In 2018, AIM proposed to Health Minister David Clark that the maternity sector be restructured, so women who want to have their babies in primary care units or at home be cared for by the current community midwives; all other midwives would be employed by DHBs, which would assign a pregnant woman to a small team, members of which were all familiar with the case. They could be well paid, with better working conditions preventing midwife exhaustion and burnout, and the patient would get continuity of care. About 88% of New Zealand women choose to give birth in hospitals.

The Hoopers. Photo/Adrian Malloch

Hooper says a maternity care team, with members working in a way that is accountable to each other, checking others’ standards of care as a matter of course, and being accountable to the DHB employer, is in a better position to provide safe care than any individual, independent practitioner. “Our aim is a focus on quality and safety. It’s the difference between feeling safe and being safe. I would like to see a system built not on philosophy and agendas, but on evidence.”

New Zealand moved to an autonomous midwife-led maternity care model in 1990, when law changes also removed the requirement for midwives to have a nursing background.

College of Midwives chief executive Alison Eddy says the issues identified in HDC reports into problems at Hutt Valley and other DHB maternity services when failures occur, happen internationally too. She also points out that Each Baby Counts, a quality improvement programme by the Royal College of Obstetricians and Gynaecologists in the UK, looking at newborns who died or were severely disabled after incidents during labour, highlighted exactly the same issues as health commissioner Anthony Hill. The UK, like every other Western country other than New Zealand, has a doctor-led maternity service. “This is a completely different jurisdiction with a different maternity system to ours, and the themes are almost word for word. So we can take from that these are universal issues to do with maternity services, and they are not peculiar to our maternity system or our workforce. They are just things that happen when things don’t go well.” 

The problems illustrated by HDC cases where failings had occurred were a complex interweaving of systemic and personnel factors that can’t be seen in isolation, she says. “When we have poor resourcing, poor staffing, these things are magnified. It’s like putting accelerant on a fire. And cases are always undertaken on a retrospective notes review, and midwives and doctors don’t always write in the notes: ‘On this day I was running between four rooms and I could only give this much attention to this woman so therefore I perhaps didn’t do my assessment as thoroughly as I could have.’ You can’t really tease it out in a way that is tangible.” She says the health system has taken some lessons from the aviation industry in looking at failures from a systems perspective.

Eddy is optimistic that a new chief executive at Hutt Valley – Fionnagh Dougan was appointed in March – will turn the service around. “She is taking the issues very seriously and working strategically to address them. Previously, that didn’t seem to have been the case, when from what we understand, there was a lack of attention by senior management historically to the staffing issues.”

She says managers and planners haven’t well understood that maternity services can’t be managed by simply increasing waiting list and wait times for services. “Maternity service provision is time-critical and it needs to be prioritised as an acute service [like the emergency department] when resources are being allocated.”

There are flow-on effects of shortages in both community and hospital midwives, Eddy says. “When you have a short-staffed hospital, it makes it very difficult to be a community midwife because you have to interface all the time with the hospital to provide care and there is no support for you there to do that work.”

Community midwives are also dealing with more complex and demanding cases than in the past, says Eddy. Until 2007, district health boards employed teams of midwives to look after such cases and claim payments from the midwifery fee schedule.  After 2007, they could no longer make those claims; the money was instead put into their baseline funding, and DHBs stopped providing the service. “Those women have migrated into the community [midwifery care] without any additional resource or support to look after them.”

The college says fewer hospital midwives work full-time than any other DHB workforce, highlighting how midwives are reducing their hours to manage stressful working environments, and says amounts of sick leave tells a similar story.

There is no doubt the delivery ward at Hutt Valley Hospital has been particularly dire, not only because of under-staffing; in fact, a workforce vacancy chart produced for DHBs showed as at 31 December 2017, Hutt Valley had no vacancies, much better than most DHBs. At the same time, Auckland and Counties Manukau were both short of about 30 midwives or 20% of the staff required. But Eddy says the full-time equivalents required, and assessment of vacancies, were likely not to have been accurately analysed. For example, Hawke’s Bay and Bay of Plenty DHBs had 39 midwives for an almost identical number of births, while Hutt Valley had just 31.

Prue Lamason. Photo/Supplied

Hutt Valley DHB member Prue Lamason says the hospital’s maternity facilities are not fit for purpose. Lamason, who became aware of how bad things were at the hospital a couple of years ago because her daughter is a lead maternity carer who delivers there, has been campaigning for improvements ever since. The hospital is now about five midwives short, but also needs midwifery managers. She says conditions at the unit are “horrifying”, vital equipment is lacking and furniture is old and shabby. During one recent delivery, the partner of a woman giving birth had to hold a ceiling tile in place because he was worried it would fall on her. “It was lucky he was quite tall.”

She says the board has approved an upgrade to facilities, but that will be over a three-year period – down from the initially agreed five-year plan, which she vehemently opposed because of the length of time it would take.

Midwifery pay rates are a national issue and “because of who they are, they can’t fight. You can’t say, ‘Well sorry, you’ll just have to cross your legs because I’m going on strike because I’m not paid enough.’”

In an “incident review” after Ellie’s death, the Hutt Valley DHB said the maternity unit was very busy that night, and short of midwifery staff. The clinical midwifery manager had worked as a manager in the morning and as a core midwife in the evening. “There was not really a clear person in charge who could oversee and coordinate services efficiently. This could be because of the lack of actual staff on the floor and confusion around the [midwife manager] working as a midwife.”

The DHB told the HDC it had introduced a number of changes in 2018, including establishing a new theatre midwifery team, made up of midwives trained and oriented in operating room practices. It had increased the role of midwifery managers and was recruiting extra staff to ensure a midwifery manager was on every shift. It had also introduced a cardiotocograph interpretation card, to help staff interpret and document the traces, and rules around what action should be taken when traces were abnormal.

The LMC midwife told the HDC that since Ellie’s death, she had taken CTG courses annually and if the same circumstances occurred now, would be able to more accurately interpret the results and escalate her concerns.

Likewise, the obstetrician said with hindsight and further training, “I have come to realise that the marked hyper-variability on a CTG trace indicates the likelihood of a neurological insult. This was not widely known or publicised at the time of these events. Looking back, and if faced with the same circumstances, I would proceed with an emergency caesarean section.”

Related article: Why are qualified midwives choosing not to practise?

Ruth and Kazu Toyoshima conceived son Lyo just two months after the death of their baby daughter. Photo/Nicola Edmonds
Hooper’s AIM co-founder, Christchurch general practitioner Dr Lynda Exton, a former GP-obstetrician, says another problem for families such as the Toyoshimas is that most don’t realise or aren’t told that applying for ACC treatment injury cover is a possibility and simple for them to do – so many miss out.

In 2008 Exton wrote a book, The Baby Business: What's happened to maternity care in New Zealand?. She says the most recently published Ministry of Health Report on Maternity figures are that in 2017 just "One-third (33.1%: 19,773) of women giving birth in 2017 had a normal birth." However our system is based upon the "birth is a normal life event" philosophy rather than reflecting the reality experienced by the majority of women. She says this mismatch can lead to avoidable tragedies such as the loss of baby Ellie when emerging problems are normalised.  

"We believe that the family or whānau of every newborn baby that ends up in NICUs and special care baby units following birth asphyxia, especially otherwise healthy full term babies, should be automatically advised and assisted to put in an ACC treatment injury claim," says Exton. 

Lyoma was "a gift from the Japanese gods". Photo/Nicola Edmonds

With Hooper’s assistance, the Toyoshimas received a $6000 bereavement payment from ACC, which they have used to establish a memorial garden, in which they’ve planted cherry-blossom and Japanese plum trees. Ellie was cremated, and half her ashes are here, the other half with Kazu’s family in Japan. “We didn’t want her in a grave because she would be there by herself,” he says.

After Ellie died, Ruth and Kazu left New Zealand for a short stay in Japan. “We walked lots of mountains, and also prayed at hundreds of shrines for another baby,” says Ruth. Astoundingly, she conceived naturally two months later and the couple are now the parents of a boisterous two-year-old, Lyoma (Lyo), who was born in July 2017, three days before Ellie’s birthday. “We’ve always felt like Lyoma was a gift from the Japanese gods,” she says. “Obviously, it really helped us through the grieving process because it felt like he was a blessing from his sister.”

However, a recent attempt to have another child, using their last remaining frozen embryo from their IVF treatment, has failed. They cannot have another round of publicly funded IVF because Ellie was deemed to be a “successful pregnancy” and they have conceived naturally since.

Ruth wakes at least twice a night to check Lyo is still breathing. “It just makes you appreciate how precious a child is. And that’s why I didn’t go back to work after I had him. I’ve lost one child and I don’t want to lose a minute with him because they are so precious.”

Kazu believes there is a lot of Ellie in Lyo. “I put that to my family and they cried and said, ‘Ellie came back.’”

Mother and Child Mortality Review

Ellie Toyoshima’s death was one of 71 potentially avoidable neonatal deaths caused by lack of oxygen to the brain during birth that occurred in New Zealand between 2013 and 2017. The Perinatal and Maternal Mortality Review Committee’s latest report finds “personnel factors” contributed to nearly a third of the deaths, “organisation and management” to 21%, and barriers to accessing care nearly 20%.

Of the personnel factors listed, the main failures occur in:

  • Failure to offer or follow recommended best practice.
  • Knowledge and skills of staff lacking.
  • Failure of communication between staff.
  • Failure to seek help/supervision.

Key organisational and management factors include:

  • Delay in procedure (e.g. caesarean section).
  • Failure or delay in emergency response.
  • Equipment (e.g. faulty, inadequate maintenance, inadequate quality or lack of equipment).

The main barriers to access and/or engagement with care are:

  • Infrequent care or late booking.
  • Lack of recognition of the complexity or seriousness of condition by the woman and/or family.
  • Environment (e.g. isolated, long transfer, weather prevented transport).

This article was first published in the January 2020 issue of North & South. Follow North & South on Twitter, Facebook, Instagram and sign up to the fortnightly email for more great stories.