Struggling to grieve
A new government website will help simplify and standardise the information available to parents who have lost a baby. But grief support remains far from consistent nationwide. By Nikki Macdonald.
Erich Livengood still sets the kitchen table for four children every day. He and his wife lost their son in June 2018, at 391⁄2 weeks. He just stopped kicking – no-one knows why.
The shock and denial were like the stupor of two days without sleep. They stared for five hours at the information brochure, seeing but not comprehending.
Wellington Hospital was excellent – organising a private room away from the joyful faces snuggling newborns.
They named him Kereru, after the grey-green bird that swooped around his pregnancy.
Information was a gift: take photos; take cuddles; take him home. They spoke for 45 minutes to a volunteer from baby loss support organisation Sands.
They’d just got a bigger house and car to fit a bigger family. Instead their world closed in, and another world of complication opened up. How do you tell your work? How do you talk to a community that doesn’t know what to say?
How do you walk into a cemetery to request a grave, for the child that is still in his mother’s womb?
‘‘It’s really, really traumatic.’’ Livengood says. ‘‘I don’t think anybody is really prepared for it. In antenatal classes, no-one mentions the word stillbirth. A hundred years ago, every family would have been touched by losing a child. Society would have been woven around that.’’
While he got good information in hospital, Livengood knows that’s not the case for all parents. Like so many aspects of healthcare, what you get depends on where you are.
Hopefully, that will now change, with a new website providing information about government requirements and services for the 800-1000 Kiwi families who lose a baby every year through stillbirth, foetal abnormality or sudden infant death.
It also covers miscarriage before 20 weeks, which affects 13,000 to 15,000 families.
It’s 21 years since Vicki Culling lost her baby girl Aster. For 17 of those years she has worked for better recognition for bereaved parents, throughsands, as a founding member of the committee investigating the deaths of babies and mothers, and through training health workers about baby loss.
Most recently, she’s been fighting for better information for those struggling to make sense of convoluted government requirements and entitlements, when the world no longer makes any sense at all.
In 2018, someone finally listened – Internal Affairs Department life events manager Becky Cassam. They held hui for parents, which found information about financial help, the coronial process and stillbirths were the biggest ‘‘points of pain’’.
One story stuck with Cassam. A baby died at home in Northland and was flown to Auckland for an autopsy. But mum and dad couldn’t afford to follow their baby south, and the coronial system is funded only for the dead.
‘‘That’s hard. Really hard . . . By putting all this info on the site, those parents could qualify for financial assistance from the Ministry of Social Development, so that they too can travel with baby.’’
The website was launched on Friday. It’s called Whetu¯ rangitia, which means return to the stars.
But confusion remains in some areas. When one couple’s baby died, they tried to transfer the mother’s paid parental leave to the father, who had quit his job when they found out the unborn baby was sick (see sidebar).
Nothing on the eligibility form suggested they didn’t qualify, but their application prompted an upsetting phone call from an Inland Revenue worker warning the bereaved mother she would be prosecuted if she worked while claiming parental leave.
Ministry of Business, Innovation and Employment spokesman Gerard Clark says paid parental leave cannot be transferred after a baby’s death, because the leave provides for ‘‘primary carers of a child’’.
‘‘The act allows a birth mother to take time away from work to physically recover from childbirth as well as psychologically recover.’’
Culling says the new information website is ‘‘a dream’’. But information is only half the battle.
‘‘The other strand is support. At the moment, the agency providing the most support for grieving parents is a small NGO made up of volunteers. People are doing it from the goodness of their hearts.
‘‘But you’re at the mercy of someone deciding they will help. So if you are in an area with a strong Sands group, such as Taranaki, you’ll get visited in the hospital, get hand and foot casting done, some meals provided, support groups to attend and one-on-one peer support.
‘‘If you are somewhere with no Sands group, then you won’t get those services.’’
While some health boards provide counselling through social workers and some GP practices fund free counselling sessions, for many families the only option is private counselling at $50-$150 a session, Culling says.
She is calling for a national structured and funded support system, possibly similar to the Victim Support system, which provides follow-up care for victims of crime.
‘‘If you are in hospital delivering a stillborn baby, and your car is stolen from the car park, you are more likely to get a visit from Victim Support about your car being stolen.’’
Stuff asked all 20 health boards if they provide counselling for bereaved parents. All but Hutt Valley and South Canterbury say they do.
However, that does not square with the evidence of families. A Sands survey of 56 bereaved parents concluded: ‘‘Overwhelmingly, counselling was mentioned as the most important form of support that bereaved parents wanted but did not get.’’
There’s also concern about whether some counselling is appropriate.
After Kereru died, Livengood went to a counselling session provided by a social worker at Wellington Hospital. It was, he says, ‘‘not fit for purpose’’.
‘‘It was more detrimental than helpful. You have to go to the maternity section and wait there with all the expectant mothers. Then you go in and talk to somebody who is, I think, probably most of the time counselling on abortions. And so on the wall you’ve got all these things about ‘Do you want an abortion?’ ’’
Delwyn Hunter, Capital and Coast DHB’S surgery, women and children’s directorate spokeswoman, says it can’t separate pregnant and nonpregnant women in the health service waiting rooms.
‘‘We are always sensitive to the needs of women, partners and families/wha¯ nau and work
to ensure that counselling occurs in an environment that is respectful to them.’’
College of Midwives midwifery adviser Claire Macdonald also advocates funded counselling and peer support for grieving parents. While investigations to find out what went wrong are standardised nationwide, support is variable.
Midwives can help in the first six weeks, but after that, families are largely reliant on volunteers, she says.
‘‘Families need to be able to access support services and counselling when they feel they need it. That might be within that first month or so after the birth, but more likely it’s going to be down the track. Sometimes it’s not until a woman is pregnant again, when she or her partner or her wha¯ nau really want some counselling. So we really support equity of access to appropriate and ongoing bereavement support.’’
There’s a lot we don’t know about why babies die. The biggest cause of neonatal death is women going into labour before 28 weeks.
The highest premature labour rates are in poorer areas, says obstetrician and gynaecologist John Tait, who heads the Perinatal and Maternal Mortality Review Committee (PMMRC), which analyses baby death statistics.
In New Zealand, Ma¯ ori and Pasifika families are more likely to suffer the loss of a baby.
That’s likely to be due to poorer access to health services, and the fact they’re more likely to give birth in smaller hospitals that don’t have the same facilities to deal with premature babies, so those babies are less likely to survive.
But Indian babies also have higher death rates, and no-one knows why.
While stillbirth rates have improved, through early identification of low weight, atrisk babies and safe sleeping advice, New Zealand’s neonatal death rates have not fallen, whereas those in other countries have.
Tait says more work is needed to prevent premature labour – Western Australia has introduced a whole premature labour prevention package, which reduced pre-term birth by 8 per cent.
Health workers need to ask Ma¯ ori and Pasifika families what services they want, instead of telling them what they need, Tait says.
He says the Health Ministry also needs to implement the PMMRC recommendations, which last year included setting up a group to consider a preterm birth prevention programme, developing a national pathway for the care of women in premature labour and ensuring sufficient midwifery staffing.
‘‘We are a body that collects the data, sees the trends and makes recommendations. And one of our frustrations is that some of those recommendations don’t seem to go anywhere.’’
The Health Ministry says it is ‘‘incorporating the relevant PMMRC recommendations’’ into a maternity work programme under development. However, it rejects the key recommendation for a national care pathway, saying DHBS are best placed to respond to their population’s needs.
Tait also calls for standardised national support for bereaved parents.
‘‘We are concerned again about the variation across the country.’’
From 2007-2016, 31 babies could have been saved if the system’s ethnic inequity was
fixed. That is devastating, Tait says.
‘‘What’s devastating is the loss to the women, the family and the wha¯ nau. That’s one of the things that’s really important to talk about and to absolutely acknowledge – that behind these numbers there’s a family and a story.’’