ACC is trying to reduce the number of newborns sustaining brain damage, which can cause lifetimes of hardship and cost hundreds of millions of dollars in medical misadventure claims.
There are about 50-70 cases of NE every year, with each claim costing between $33 and 55 million over a lifetime. Photo: 123rf
For the next month the neonatal encephalopathy taskforce is running a series of regional workshops looking at ways to reduce the number and severity of cases.
Neonatal encephalopathy, or NE, is usually associated with reduced blood or oxygen supply to the brain.
In the past five years ACC has accepted 47 claims for NE with each claim costing between $33 and $55 million over a lifetime.
Suzi Paisley's son Kahn is one of those receiving around-the-clock care funded by ACC after he was severely brain damaged at birth 13 years ago.
"It's a really big medical procedure every single day at home. His room is like a hospital room - we've got nurses as caregivers. The seizures are all night and all day and he has chest infections and he's got frequent urinary tract infections because he can't empty his bladder and he can't be catheterised so we are constantly dealing with how to manage all those sorts of things."
Ms Paisley cannot work and said the family's life revolved around looking after Khan.
"He needs someone with him all the time as his airway needs to be kept open. He's really at risk. He sleeps very erratically during the day, which means he's awake a lot at night, and if he's not awake, his oxygen saturation level drops. He really requires round-the-clock care."
Jenn Hooper is the mother of an NE child and has set up a charity, Action to Improve Maternity, to support parents with maternity care-related concerns.
She said her daughter Charley's life was hard to put into words.
"It's like watching your child remain essentially the progression of a newborn where there is no further progression for a decade so far and an unlimited time yet to come. The tortuous part really does comes when I have to watch her suffer through some of it and there's not a damn thing I can do about it."
As a member of the taskforce Ms Hooper said she was hugely optimistic about what it will achieve in the next five years.
"I believe the NE kids have really been ignored for ever and now finally we've got them on the radar and people are working really hard to try and look at ways to prevent this which is fantastic. It's really exciting and I'm so proud to be a part of it," she said.
Another taskforce member, neonatologist Dr Malcolm Battin said with about 50-70 cases of NE a year, the taskforce's work was going to take some time.
"We think there is an air of preventability and that's the reason for doing this work. Probably the most important part of that is to make sure it's a comprehensive approach involving all those so-called stakeholders in the maternity system and making sure it's evidence based."
The taskforce is made up of a broad range of representatives from the health sector including neonatology, midwifery, obstetrics, business, government, project management and consumers.
Its aim is to reduce the number of NE cases by 10 percent by 2021.
The taskforce's chairman, Chris Gudsell QC said the group wanted to develop national improvement programmes.
"There is a process we are going through at the moment, looking at initiatives. At the end of the day, it's developing a national improvement programme that all sectors involved in the maternity area, including the consumer, have an input. "
Members of the taskforce were putting their ideas to representatives from the maternity sector in the nine regional workshops, which begin in Dunedin tomorrow.
