A tragedy which doesn't register

When a child dies suddenly, a family's nightmare can be
made worse by officialdom. TIM WATKIN reports.

It was fine and sunny the day Deverauxe died. His grand-aunty Wendy Jacobs remembers that as clearly as she does so many other details of that terrible time. She will always remember how uninformative and disrespectful police were, waiting in the morgue for six hours, and the funeral director trying to squash her grand-nephew into an undersized coffin.

Sitting in her small unit in Mt Maunganui, Jacobs, aged 49, talks about the little boy who fell prey to Sudden Infant Death Syndrome (SIDS) after only two months of life and the "hell experience" that followed.

Deverauxe (his family doesn't want his surname used) died at 8.30 am on November 12 last year. Jacobs recalls getting the phone call from her sister, picking up her dad from Matakana Island and heading for Auckland. "We got to the house [about 11.30 am] and there's police everywhere. I appreciate they had to treat it like a homicide, given the fact there's so many babies being killed. But they were really rude."

They were allowed to hold Deverauxe but couldn't take him anywhere until a police photographer came to take pictures of the bedroom where he died.

"About 5 pm we were still waiting for someone to come and tell us what was going on ... They didn't tell us what they were doing and why. "

Finally, about 5.30 pm, the family was told they could keep the baby for the night but to have him at the morgue at 5.30 the next morning. "So my sister and I and my dad, who's 80, all went in. They had to go in and turn the lights on for us." They found the pathologist didn't start work until 9 am and the X-ray department didn't open until 10 am. "We were still there at 11.30 am and this detective came out and said, 'We've found no evidence of foul play. You can take the baby now'. No apology, nothing. We had six hours in a morgue - no tea, no coffee, no communication, nothing."

At the funeral director's they had another shock when they went to dress Deverauxe. "Nobody had told us what they had done to the baby. He had bruising, really bad bruising on his legs and arms done during the post-mortem. And he had one of those long cuts," she says, running her hand down her chest.

Then, when they found the coffin was too small, they were told that was the only one available. "[The funeral director] got our baby and he honestly tried to fit him in. We were tired and hungry and really, really pissed off by this time."

It was hours before another coffin was made and they were able to drive back to Matakana to bury their wee boy. "It was all so insensitive," says Jacob."That's the word. So insensitive."

You might think this awful series of events is rare. You might assume that when a child dies unexpectedly in New Zealand there are well-established procedures followed by those who become involved, such as police, pathologists and support agencies. You might expect that extensive information from unexpected deaths is pulled together so that lessons can be learned and other children saved.

In each instance, you would be wrong. Death scene investigations are incomplete and frequently mishandled. Child deaths in the community are treated quite differently from those in hospital. There are no consistent inter-agency procedures. There is no child's death register, where details are recorded and analysed.

The tragedy here goes beyond one family's grief. This is a story of a broken system in which coroners, doctors and other health practitioners say children are dying needlessly for want of information and proper procedures.

Carol Everard is the national coordinator of the Infant Mortality Register, and was coordinator of the New Zealand cot death study from 1987 to 1990. It was then she realised that she was seeing families suffering the same difficulties time and again. "It became very obvious that the actual investigation of the death was causing huge extra trauma to families on top of having lost a child."

She started asking around and found the investigation was not only painful, it also revealed little pertinent information. "I found a very dysfunctional system."

Rachel Upton, who has been at close to 20 death scenes in her six years of voluntary work as a SIDS parent advocate, has seen first-hand the inadequacy of death scene investigations.

"People take for granted that these things are approached well when, in fact, there's nothing there. It's the luck of the draw as to who gets what on the night, and that's not on."

As Dr Patrick Kelly, clinical director of Whakaruruhau, the child abuse unit at Starship hospital, says, "Nobody knows how many children and young people are dying and of what they're dying. There's no central system where, if a child or young person dies, a little light goes on to acknowledge that death."

He has no doubt that void is costing lives. At an Auckland Mayoral Forum in June he damned the existing system. "Yes, it is a disgrace that children die the way they do, but it is even more of a disgrace that a country full of highly trained professionals, in all of this time, has not managed to create a system that can learn from those mistakes."

Coroners, charged with investigating the causes and circumstances of deaths and identifying prevention methods, do collect some data. But they have long been under-resourced. They have long lobbied for a central database and more detail from death scenes, and agree the system is inadequate. A Law Commission report in August last year said, "Under the present haphazard system there is no centralised recording system which would allow patterns to be discerned and responded to ... "

Police act as coroners' agents at a death scene. Officers admit some investigations are mishandled, but insist they are trying their best in a terribly fraught setting. As soon as a "1-S" (sudden death) is called in, a senior officer is dispatched to take charge of the scene. They then have to gather information from the family for a P47 form, which is passed to the coroner. But that only includes basic facts.

So is the problem simply a woeful lack of information? Not exactly.

Figures exist - we regularly hear death tolls for cot deaths, traffic accidents and so on. The New Zealand Health Information Service (NZHIS) can provide statistics on child and youth mortality - the number of deaths of those aged between four weeks and 24 years was 939 in 1996, 880 in 1997, and 788 in 1998. The problem is fragmentation. Consider these examples:

* Auckland Hospital psychiatrists collect suicide numbers and the LTSA reviews road deaths, but such information is never collected into a central health database.

* Everard's Infant Mortality Register gathers data on the deaths of all newborns to one year-olds, but the cases aren't reviewed.

* Information from every case referred to the coroner is filed, but you'll have to go to Wellington to read those files - they're all still on paper. And given that a coroner's report takes between two months and two years to be completed, it's an open question how up-to-date the register will be at any given time.

* As for the NZHIS data, that figure from 1998 is the latest available and there's no detail on each case.

Richard McElrea, chairman of the Coroners' Council, says death data is "partial, fragmented, and not readily retrievable'.

Kelly: "It's at least two years before a death appears on a statistical record that a health provider can access. If there's a surge in child deaths in Auckland tomorrow, the statistical blip would appear down in Wellington two years from now."

Belatedly, change is on its way. When the Government quietly passed the Public Health and Disabilities Act last December, tucked away in it was a clause that signalled a slither of success for Everard and her colleagues after more than a decade of lobbying.

The act established the Child and Youth Mortality Review Committee, which will be responsible for reviewing the death of everyone aged between four weeks and 24 years who dies in this country. It, in turn, will set up local committees in each health district that will gather and analyse data on each death and propose ways of preventing further deaths.

To do this, the committees will have extensive powers. They will be able to overrule the Privacy Act and doctor-patient confidentiality and require health practitioners to share information. (This information will be kept confidential by the committees.)

The 12-person national committee will meet for the first time this month.

"Thank God," sighs Barry Taylor, head of Paediatrics at Otago University and the committee chairman. "It's been a long time coming and a long push to get a government into this. There's been talk for at least 10 years."

The delay, he says, comes down to priorities. With the health system in a constant state of crisis, spending money on children has not been top of the list. Taylor says even now the committee will be relying on winning co-operation from the district health boards as it has limited funds for its own staff. "The Government has given us money for quality assurance. It hasn't given us money for service provision." For District Health Boards to make mortality reviews a priority, Kelly believes, there will have to be a clear message from Wellington. "There will need to be a directive from the ministry to DHBs to say this is a priority because DHBs are all under enormous pressure."

Everard, one of just two non-health practitioners on the committee, says it's a long way off setting up the local committees. "Just getting the infrastructure in place is a huge job."

And there remains some debate over how that infrastructure should work. McElrea says coroners want their own information system - gathering similar data to the new committees, but on all referred deaths, not just children's. He's worried about duplication. "We're supportive of as full a process as possible, but it needs to be integrated with the coroners' process, not operating outside it."

Such debates raise concerns that these new committees might be nothing more than bureaucracy and red tape.

British Columbia, Canada, offers evidence of the difference a mortality review system can make. After the death of a boy called Matthew Bodrill at the hands of his mother five years ago, a public investigation uncovered a series of system errors and occasions when care agencies failed to intervene. Sound familiar?

In Canada, the response was to establish a Fatality Review Process under the auspices of the Children's Commission. In 1995, 488 children a year died in British Columbia. Last year that figure had fallen to 344.

Although not nearly as exhaustive, mortality reviews do take place in this country when a child dies in hospital or before four weeks of age. There are also doctors and nurses on hand to answer questions and often social workers for counselling.

"But none of that's available if you have the misfortune to die unexpectedly outside the hospital, and in some ways you'd expect the grief and questioning to be greater there because there's been no time to prepare," says Kelly.

Everard: "The ambulance officers go in and if they can't do anything the police go in. Then there's a post-mortem done. But there's no one going back to the family to tell them anything. There's a real gap there."

This is where Everard says it's vital to go beyond the data gathering and analysing work of the national review committee. She wants a new inter-agency death scene protocol designed to save others from the indignities suffered by Deverauxe's family.

Whereas deaths in hospital are a health issue, in the community they're largely legal - the police dominate the scene and the cause of death is signed off by the coroner; typically a lawyer.

Everard has both criticism and sympathy for police entering a death scene. "If you look at what's collected for a forensic investigation, the young policeman's had just three months' training down at the college, he may have been on some horrendous job the incident before, he is perhaps walking into a cultural situation he doesn't understand and might quickly want to take some notes and get out."

Upton has seen how police behave at death scenes. Some are very good. Many are not.

There was the time officers were taking the child for post-mortem. "At the bottom of the drive they whipped its clothes off and asked the poor parents, 'Do you want the clothes or not', before they threw the baby in the boot. There needs to be somebody there to bring a balance, so the police aren't in total control."

Everard suggests two more strands of intervention alongside the forensic investigation: a medical examination and social support.

She says a doctor needs to complete a thorough investigation of a death scene, answer parents' questions and pull together the child's medical history for the pathologist and coroner, while a parent advocate should be there supporting and informing the family.

Upton says a parent advocate can make a huge difference at an agonising and bewildering time, contacting Plunket, arranging photos or handprints of the baby, advising on the funeral - everything grieving parents find hard to cope with. The lack of a medical investigation is disturbing, says Kelly, especially for pathologists.

"The pathologist in a post-mortem may be completely unaware whether the child has been in hospital before, whether the child's been notified to ACC or a child welfare agency, and won't have access to information held by the DHB. The pathologist goes into the post-mortem blind to the medical history."

There's some debate about who should do the medical investigation - on-call paediatricians, pathologists, even suitably trained GPs have been suggested - and the national committee will have to decide that in the next six months.

Everard is supportive of the national committee's plans, but she wants a comprehensive review system and new death protocols introduced in Auckland while the rest of the country is coming up to speed. The system's "ready to go" here and could act as a pilot for the rest of the country, she says.

Frustrated by a lack of support and funding, this year she bypassed the Beehive and approached Auckland mayors. She found a champion in Christine Fletcher, who was committed to funding the system even if it meant higher rates. She's been urging the other mayors to fulfil their promise of assistance, but the proposed system may hit a roadblock in new mayor John Banks. He says he hasn't yet heard of Everard's plans, but adds that social services are not core council business and should be left to central government.

There are friends waiting for Jacobs to take her into town, but before she goes, she tells me again what a beautiful boy Deverauxe was.

Clearly, no system can fill the gap left by a child's death. But if there are things we can do to save lives in the future - simple, structural things that we are not doing ...

"That would be really good," she says. "Hopefully then they'll get a programme in place and it'll never have to happen again."