More lives are lost to miscarriages under 20 weeks than deaths on the roads, yet services for affected whānau are fragmented or even non-existent in many parts of the country.
Support groups are calling on Te Whatu Ora and the new government to fast-track plans for a national framework to set basic standards of care and bereavement training for staff.
Losing her first baby, Jacob, at 12 weeks gestation was made more traumatic for Steph Whitehouse by her experiences at hospital — having to tell her story to busy staff over and over again.
When she and her husband finally saw a specialist, he recommended a D&C (dilation and curettage) as the fastest option — but did not explain they would not be able to see their baby afterwards.
“What I later found out was they had thrown him away with all the medical waste for the day. I already felt like a failure for not being able to carry a pregnancy to term and then there was this added layer that I had failed him as a mother because I had allowed him to be thrown away like rubbish. And he wasn’t rubbish. He was my very loved, wanted child,” Whitehouse said.
Nicole had two miscarriages last year, both confirmed at nine weeks.
A nurse herself, she had to push to get the help she needed, both medical and mental, going between the GP and the emergency department seeking blood tests and scans — even trying the national abortion helpline for advice.
“To go through two miscarriages in the space of two months was really hard and I felt really shat on by the health system that there were not enough resources, nobody knew what they were doing, no one could help me, and I was basically doing it on my own.”
She eventually got help from the Early Pregnancy Unit in Rotorua, which had yet to officially open at that time. “I think they felt sorry for me.”
These women’s experiences are far from unique.
The Perinatal Bereavement Support Environmental Scan report, released recently by Te Whatu Ora, found services were patchy across the country.
Parents described a sense of disconnect between themselves and hospital staff for whom it was “business as usual”.
Some families reported leaving the ED with their pēpi in an envelope box and no follow-up care, while in another region, nurses were buying boxes to ensure whānau could take their dead babies home.
Others described seeing their child taken for a post-mortem in a kidney tray or casually bundled up in a dirty surgical cloth.
The report’s recommendations included developing a national framework to set basic standards of care, and bereavement training for all staff involved in perinatal care.
‘Glacial’ progress on national bereavement pathway – advocate
Community advocate Vicki Culling — a founding member of the national Perinatal and Maternal Mortality Review Committee — runs training for midwives, nurses, doctors and other health professionals on dealing with baby loss, in association with SANDS, the Stillbirth and Neonatal Death Charity.
She said a national bereavement pathway was first recommended in 2019 and finally given the go-ahead by then associate health minister Ayesha Verrall in 2021.
“But progress has been glacial.
“Our highest number of losses is under 20 weeks, we know that.
“And my frustration is, that for an event that happens so regularly, why would we not be better at supporting the people going through that?”
The report also recommended more government funding for community organisations “so that they can continue the essential work they are doing to fill the gaps left by a lack of statutory services, instead of having to expend energy on fundraising”.
SANDS chairwoman Melanie Tarrant said its training programmes for midwifery students was making a real difference to the lives of many families, and many midwives had reported it had been invaluable to them in their practice.
“We would love for this to be funded but at the moment we have decided that it’s a really high priority for SANDS New Zealand, so that’s why we’re paying for it.”
Whitehouse said the support she received from SANDS was “life-saving”.
She closed the door on motherhood after seven miscarriages in two years — the last one at a SANDS conference in 2019.
“Society tells you all the time, ‘Oh they were under 12 weeks, they weren’t a real baby’, your grief isn’t validated.”
She was moved to receive a gift of a teddy bear, embroidered with the names of her seven babies.
“When our children die under 20 weeks, you don’t have anything that’s tangible: you don’t have a casket, you don’t have a birth certificate or a death certificate. You don’t have anything to prove they were really here. So my bear is incredibly special to me because of that.
“There are actually more children dying from miscarriages under 20 weeks than there are road deaths in the whole of New Zealand. Yet so much money and advertising is thrown at reducing road deaths, yet nothing is done about this.”
Te Whatu Ora said it was working in partnership with the Māori Health Authority Te Aka Whai Ora on a “phased development” of a national Bereavement Care Pathway.
The official in charge, Rachael Hetaraka-Gotz, said phase one was getting feedback from whānau through both the Perinatal Bereavement Support Environmental Scan and the Triennial Maternity Consumer Survey.
“Phase two, pathway development, is planned to commence in early 2024. The pathway development will be informed by phase one.
“Concurrently, Te Aka Whai Ora are leading on the procurement of a resource to provide immediate support to bereaved whānau nationally, as an interim measure. This resource will be implemented nationally in 2024.”
By Ruth Hill of rnz.co.nz