Content warning: This article refers to miscarriage and stillbirth.

Health NZ is working on a new care pathway for families grieving the loss of pregnancies and the deaths of neonatal babies. Prior research shows care has been “largely inadequate”. Kiwi mothers share their stories of loss, and how they have been let down by the “fragmented” care for bereaved parents.

For the rest of her life, Chercara Harman won’t know what happened to her first baby’s body.

“Misplaced” was the word the hospital staff used.

“When I had my first son I was 19 at the time, newly married. I went into the hospital... they thought I was having a miscarriage but it wasn’t confirmed,” she said.

Harman, who was 12 weeks along, felt she was treated “quite badly” due to her age.

“I ended up having my son on the toilet in the Emergency Department. I came out with him in my hands, they basically snatched him out of my hands.”

For three hours Harman remembers asking: “Where’s my baby?”, but nobody could give her any answers.

“The only explanation I got was ‘I’m sorry, he’s been misplaced’.

“We didn’t get any results, we didn’t get any follow-up. I have no idea, to this day, what happened.”

It was the first of many losses for Harman, who now runs a charity that provides information and support to families that have suffered stillbirths and neonatal deaths, as well as those who have had premature babies.

The charity puts together free boxes that can be sent to families, including small gifts, resources to make keepsakes, and information that might be needed.

Chercara Harman's charity provides support packages for many groups, including those who have suffered pregnancy or newborn losses. Photo / 123rf.com

“The boxes we put together are really small, just to keep on hand,” she said.

Harman started her non-profit charity, Care for Families NZ, just over 12 years ago, putting together newborn packs for women in need.

“I had my first baby born prematurely and realised just how much help parents in neonatals need and what a difficult journey it is.”

From there, she moved into making the bereavement packs.

While it’s been years since Harman’s first loss, she felt not enough had changed in the way hospitals handle miscarriages and stillbirths, particularly in cases where women whose babies died in utero before 20 weeks still wanted to birth naturally.

Harman suffered her 15th loss in March this year, and said she wanted to birth her child but ended up having to get a D&C (dilation and curettage) procedure because there was simply not enough support available for women wanting to birth naturally.

“You’re expected to take the meds, wait half an hour and then take the next dose and, all going well, just go home and manage, but most women don’t cope well at home and in my case with my medical history that definitely wouldn’t be safe,” she said.

“They don’t admit women for managed inductions with the meds, so for me, the only option was the D&C because had I bled too heavily or the pain had got too much being at home, when those things can happen it is far too dangerous.”

Miscarriages, including when a person has to be given medication to clear the womb, are generally managed with over-the-counter painkillers such as paracetemol and ibuprofen.

“There’s just no care. It’s not handled in a way that it could be handled,” Harman said.

She said the pain of a later-gestation miscarriage was “pretty close to labour”, comparing it to the four full-term labours she has experienced with her living children.

“It’s still very intense. There’s no way I could have done that with that medication at home.”

She had spoken to other women who had taken the medication and miscarried at home. “They were traumatised to the point they had PTSD,” she said.

Harman recently supported a friend whose baby died in utero, and who gave birth at 20 weeks in the hospital. Harman was there to make sure she could have footprints taken and castings done to remember the baby by.

“If I wasn’t there she wouldn’t have been told about half the services available,” she said.

“The second he was born, they took him straight away. She didn’t actually know what was going on.”

Harman said her friend asked staff to bring her baby to her, but was told “we’ll bring it when it’s time”.

She was glad to be there to support and advocate for her friend in a time that was “so precious and so short”.

“We get people contacting us going ‘we didn’t know there was services available that could have helped make these memories’.”

She wanted people to know there was help out there for parents going through the same heartbreak.

“I never heard from her again”

One of the enduring memories from Megan Harshey’s loss was how she was left to deal with the aftermath with little professional assistance.

Harshey fell pregnant with her daughter in late 2021.

The 12-week scan showed everything was fine with the baby’s development so far, she said.

“You’re always told that the 12-week scan is the one that if you get past that you’re all good.”

But excitement turned to tragedy at the 20-week anatomy scan.

“The sonographer, she just stopped midway, turned off all the screens, turned to us and just said ‘I’m really sorry, I’ve just seen some red flags. We’re going to have to send you for further testing.’

“I just remember I burst into tears, it was terrible.”

The scan revealed their baby, Ronnie, had signs of clubfoot, a deformity in which the baby’s foot can be turned inward.

Harshey said she rang her midwife in a “mad panic” and spent some time “manically Googling”, but by the end of the day was not so worried and believed they would be able to deal with the condition.

Megan Harshey took a final photo while pregnant with Ronnie on the day they were to find out what was wrong with her. The photo was intended to either be a last memory of their baby, or a documentation of a crazy moment in the pregnancy.

They went on later to have an extensive scan, and were then told by a geneticist Ronnie was showing signs of arthrogryposis, a condition affecting the joints and sometimes freezing them in place.

Ronnie’s ribcage also had not formed properly, she had skeletal development issues, and her hands were clubbed. It was not possible to tell from the scan how much her brain development had been affected.

“My husband and I had always had a conversation pre-getting pregnant about what would happen if something went wrong with our pregnancy.”

The couple had already agreed they were not in the right place to care for a child with a severe disability. They agreed to have an abortion.

The couple had to go to Christchurch so Harshey could receive an injection to stop Ronnie’s heart. They then had to fly home to Queenstown and drive to Invercargill where she would deliver the baby.

Harshey was allowed pain relief such as fentanyl, but said she was not allowed to have an epidural, though she was unaware why.

“I was quite vocal through the whole thing that I wasn’t getting any pain relief.”

Harshey gave birth to Ronnie, and agreed to have an autopsy done on her.

“We had to submit a birth certificate and death certificate on the same day.”

The 20-week anatomy scan revealed Harshey's baby had a severe disability. Image / Paul Slater

She remembers a doctor coming into their room later and telling her “I’m really sorry for your loss. There’s no support that I can offer you other than saying ‘here’s some pain relief, here’s some drugs, and we’re going to send you on your way home’.”

“I will always remember those words,” Harshey said.

One of the upsetting parts of the whole ordeal was that Harshey did not hear from her midwife again beyond a text message the morning of the delivery saying “I hope everything goes well today”.

“I never heard from her again.”

Harshey went home and dealt with her post-partum body without any further medical help.

She had not been warned her body would react as though she was coming home with a live baby. Her milk supply came in, which she described as “awful”.

Harshey ended up complaining about her midwife’s lack of contact. She was told the midwife’s response had been that she would not have done anything differently.

“She just decided that she had done everything that she was meant to do, there wasn’t anything else she could offer me.”

Midwife care for loss only recently recognised

Midwifery support for pregnancy loss in the first and second trimester was only recognised for the first time in the contract for lead maternity carers services in 2021.

“Since then, funding is available if a woman wishes to have in-person care by a community midwife in addition to her hospital care for the miscarriage or birth of an extremely preterm baby before 20 weeks,” said New Zealand College of Midwives midwifery advisor Claire MacDonald.

For a loss in the first trimester, the maternity provider can offer the following services:

• - Care and advice if there is a real and imminent risk of miscarriage, the woman is experiencing a miscarriage, or a miscarriage has occurred, including:
• All appropriate assessment and care of a woman.
• Referral for diagnostic tests and treatment, if necessary.
• Contraceptive and pre-conceptual advice as necessary.

For a second trimester loss, the following services can be offered:

• - For a woman between 14 weeks 0 days and 19 weeks 6 days gestation the maternity provider may attend in-person at a hospital or community setting during the pregnancy loss event to provide advice and care in collaboration with hospital services as necessary.
• - For a woman who has experienced a second trimester pregnancy loss, the maternity provider must provide and document the following postpartum services.
• - Physical assessment and care of the woman.
• - Emotional support and care.
• - Contraceptive and pre-conceptual advice as necessary.
• - Referral for diagnostic tests, as needed, to ensure complete recovery from the pregnancy loss.
• - Referral to counselling services and/or social services, where available, as individual needs require.

“When a woman experiences a pregnancy loss before 20 weeks, the funding covers care provided for up to two weeks after the miscarriage,” MacDonald said.

“In contrast, if a woman experiences a pregnancy loss from 20 weeks onwards and wants to receive ongoing care after the birth, funding is available for the full postnatal module of four to six weeks.”

Support for grieving families “fragmented, largely inadequate, and culturally unresponsive”

Health NZ Te Whatu Ora are now working on a new Perinatal Bereavement Care Pathway to create a standardised, “high quality” approach to supported bereaved whānau.

There are about 700-900 perinatal deaths each year, and 13,000 to 15,000 miscarriages before 20 weeks, said director of Health NZ’s Starting Well, Deborah Woodley.

“The research also tells us that bereaved parents have a four‑fold increased risk for depression and a seven‑fold risk of screening positive for post‑traumatic stress disorder,” she said.

“The risk of experiencing postnatal depression and anxiety is also increased following the birth of a subsequent baby.

The current care pathways for bereaved parents is fragmented, inadequate and culturally unresponsive, Health NZ said.

“Finally, research also indicates that certain groups continue to have much worse clinical outcomes than others. Worse clinical outcomes are experienced by Māori, Pacific and Indian populations, those aged under 20 years, and those living in areas of high deprivation.”

The pathway, made in response to recommendations from the Perinatal Maternity Mortality Review Committee, was proposed following a bereaved consumer survey and environmental scan.

“The findings from these reports highlighted that pathways and services are fragmented, largely inadequate and culturally unresponsive,” Woodley said.

The national care pathway will be designed and developed to support all bereaved whānau “to consistently have access to equitable, high quality, individualised, safe and culturally responsive perinatal bereavement care”.

It’s hoped the pathway design will be finalised in March next year.

Where to get help

• - Miscarriage Support https://www.miscarriagesupport.org.nz/who-we-are/ Phone: Sands NZ (0508) 72 63 72
• - Baby Loss NZ https://www.babyloss.co.nz/new/ Phone: 0800 726 374
• - Miscarriage Matters NZ https://www.miscarriagematters.org.nz/
• - Sands NZ https://www.sands.org.nz/
• - Whetūrangitia https://wheturangitia.services.govt.nz/miscarriage/support-resources
• - Perinatal Anxiety & Depression Aotearoa https://pada.nz/babyloss/ Phone: 04 461 6318
• - Care for Families NZ https://www.facebook.com/Careforfamilies Phone: 021 230 6965

Melissa Nightingale is a Wellington-based reporter who covers crime, justice and news in the capital. She joined the Herald in 2016 and has worked as a journalist for 10 years.