No baby, no help: Depressed, grieving mum told she's not eligible for help

Photo / RNZ, Vinay Ranchhod

By Anusha Bradley for RNZ

Warning: This story discusses suicide and depression

A depressed woman whose baby died was denied help from Perinatal Mental Health Services - and other mothers in extreme distress say they can't get treatment via their DHBs or ACC. When suicide remains New Zealand's biggest killer of pregnant women and new mothers, why can't mums get help?

It is when Sarah* is thinking of killing herself that a maternal mental health service finally agrees to help her.

Despite a history of depression, a difficult pregnancy and a seriously sick baby, mental health services had twice refused to treat her, despite referrals from her midwife and doctor.

The first time was after her midwife referred her because she was feeling "sick and really low" not long after finding out she was pregnant. "They say, if you need help, you should reach out for it. So I did, and was declined."

The second time was after a routine 20-week scan during the nationwide lockdown revealed Sarah's baby had an extremely rare growth on his lungs. It was so rare and large the doctors couldn't give him a prognosis.

The surgeon who performed a procedure to release fluid from the baby's growth in utero, referred Sarah to her District Health Board's Perinatal Mental Health Service.

"It was obviously an incredibly difficult time, but that was declined and that was quite surprising for me," she remembers.

At 33 weeks her waters broke and Sarah was rushed to hospital in another city where she stayed for two weeks until her son was born by caesarean section. He was immediately whisked away to neonatal intensive care.

So now here she is trying to deal with the fact her baby is seriously ill, recover from the traumatic birth, and cope with an illness caused by an infection.

"I'm shaking on the table uncontrollably and vomiting. It was terrible."

"We didn't know if he would make it the next week, the next day. It was very precarious. Nobody had any answers. It was incredibly depressing."

Her son was fighting for his life in intensive care, often turning blue from lack of oxygen, and Sarah's mental health deteriorated. She was listless, lacked interest in anything or anyone and her family had to take care of her every need.

It's when she tells a nurse she's thinking about killing herself that a maternal mental health doctor and a counsellor finally see her.

"The care I received was top notch. When you are with them they do a good job."

But the help didn't last long. Ad then, when he was just 10 weeks old, her infant son died in the arms of Sarah and her husband.

At home, she struggles to cope but the psychologist she is seeing privately can no longer look after her and refers Sarah to Maternal Mental Health.

"She called me back and said, 'I'm so sorry they won't see you. You don't qualify for these services because you don't have a baby'. Which was surprising, because that was kind of the problem."

For five years, a group of experts have been calling for urgent investment in perinatal and maternal mental health services after revealing the leading cause of death among pregnant and new mums is suicide.

Initially, the Perinatal and Maternal Mortality Review Committee called for a stocktake of all maternal and perinatal mental health services, the creation, in 2018, of a maternal and infant mental health network and a national pathway for accessing services - all to be completed by the end of last year.

But that deadline has come and gone and only now is a little of the work under way. In the meantime, the devastating suicide figures remain unchanged since 2018, with the rate among Māori more than twice that for Pākehā.

"While suicide prevention and mental wellbeing are topical, no governmental budget has been allocated specifically to reduce maternal suicide deaths, and investment in maternal wellbeing is limited," the committee said in its latest report, published in February.

It wants targeted investment in maternal mental health to be "a key priority" and says investments should prioritise Māori.

Urgent investment is needed because demand for help is high: One in five women experience anxiety or depression during pregnancy or soon after birth. A less well-known but equally grim statistic - and one unrecognised by many health professionals - is that one in three women report having a traumatic birth, according to an Australian study.
Birth trauma can cause anxiety, depression and post-traumatic stress disorder (PTSD).

But getting help is increasingly difficult as maternal mental health services are already "stretched thin", says Waikato University senior psychology lecturer Carrie Barber. "That sort of raises the bar and the threshold, so that you have to be really pretty distressed to be considered eligible for services."

Women at the mild to moderate end of concern can access four to six counselling sessions through their GP, but it's easier said than done, says Barber. "Some of those can be very difficult to actually access because so many psychologists and other mental health professionals in the community are also really busy."

Carla Sargent. Photo / Supplied

Carla Sargent, a former midwife who provides birth trauma talk therapy, says many women referred to their local perinatal mental health service with birth trauma are declined.

"A lot of the time they have been turned down because the trauma isn't deemed bad enough. Given the leading cause of maternal deaths in New Zealand is suicide, it's a pretty poor indictment right now on our maternity services that we are tuning down women who are actively seeking support."

A lack of New Zealand-focused research on birth trauma led Sargent to investigate the issue. In 2015, she surveyed 319 women about their experiences. Difficulty breastfeeding, failing to bond with their newborn and relationships struggles were commonplace following a traumatic birth, she found. "The fallout from this trauma is devastating."

She passed her findings to the Ministry of Health but there was no response. "I know it wasn't an academic piece but it had women's voices in there saying 'I'm not okay' and there were a lot of them."

A lack of support for women struggling in the perinatal period - usually from 22 weeks gestation to around one month after birth - also concerns the New Zealand College of Midwives (NZCM).

"You can get support quite quickly for women with severe postpartum depression or issues along those lines, but people who have less of a need, there's less of a service provision for them," NZCM midwifery adviser Lesley Dixon says.

There's often no consistent pathway to get help among different DHBs, and if a mother does find help there's often a lengthy wait, Dixon says. "The midwives often end up referring to voluntary organisations to get the woman the support she needs at that point in time."

Sargent is one of those dealing with the overflow. "I think these midwives know that those women need a lot of time to talk through their experiences, to discuss what happened. I think often after this trauma, women aren't being given proper opportunities to debrief the birth experience," Sargent says.

Acknowledgement of trauma

Kate Hicks was left "feeling quite wobbly" after delivering her baby, but it wasn't until four months later that she realised there was such a thing as birth trauma.

But even once Hicks realised it was birth trauma she was wrestling with, she struggled to find any information. "That kind of flabbergasted me. That really showed me that there was a need for a resource that could offer comfort and support to women and whānau who'd had these experiences."

Her website, My Birth Story, is the result of that search. It collates information and resources for other women seeking help and Hicks says she's been contacted by hundreds of women since its 2018 launch.

She says most women just want their birth trauma acknowledged. "There are these prevailing attitudes around birth, and particularly birth trauma, that really put up huge walls for women. Attitudes around, 'Oh, you should just be grateful baby is okay, so you just need to kind of let it go'."

One of the most fascinating comments she hears is: 'Well, what do you expect, it's birth?'

"I find that attitude really, really fascinating, because if we had somebody come to us and say 'I've broken my legs', we wouldn't say to them 'what do you expect when you climbed up the ladder to clear out your gutters and fell off?' We wouldn't say that to them. We would rally around them and offer them support. But women get this attitude following birth and it's not fair and it's not helpful."

Photo / RNZ, Vinay Ranchhod

Exhausted by process

Claire* feels a certain sadness as she scrolls through pictures of her son's first year.

"Lots of his first photos are, like, taken in lawyers' offices or 'here we are at some sort of rehab thing'," she says.

She remembers a room full of people during her son's 2017 birth: Some were holding down her legs, others screaming at her to push, without giving specific instructions.

"Instead of telling us what was happening, they started telling us what they were going to do. It was just total panic, like absolute chaos, just people screaming and yelling," she recalls. "To me it was just like the biggest violation."

Her episiotomy healed unevenly and she could not have sex for 18 months. "My vagina was disgusting actually, like a whole piece of skin was hanging out of it. I had to have it removed, permanently taken off."

She is still living with a misshapen and scarred vagina, constant pain, urinary incontinence and post-traumatic stress disorder. But the long fight to get the physical and emotional trauma recognised, first by her DHB and then later covered by ACC, has left her battle weary. She feels "totally exhausted" by the complaints process.

"It's not an empowering experience. I don't feel heard. I don't feel like my or anybody else's complaints are making a difference."

After a fight, Claire's DHB has accepted it made mistakes during her son's birth, but she's still waiting for it to make changes to its practices as it promised to do. And four years on, she is still battling ACC to get all her physical and emotional injuries covered - a battle that's so far cost her $13,000 in lawyers' fees.

Some of her claim has been accepted, but only after she took ACC to a review hearing at her own cost when the agency declined her claim after wrongly basing its decision on another patient's notes. That process took 18 months. Other parts of her claim remain in dispute and the journey for recognition and justice is taking its toll on her and her family.

"It was so hard. I totally understand if people make the decision just not to fight anymore. It probably does as much damage as the original injury."

She believes she would have recovered from PTSD much more quickly if she hadn't had to fight her DHB and ACC. When it comes to birth, she believes the public health system and ACC's focus is all wrong.

"The interventions that we're doing, we're doing them for the baby. There's no way that cutting my vagina with scissors was a good thing for me. That's a treatment that they do because of the baby' s needs.

"So we're getting a whole load of stuff done to our bodies - and we want our babies to be okay, like no mum is going to say 'no I don't want that to happen to me' and risk their child, but then we're left with debilitating injuries.

"I think it makes the transition into motherhood really challenging."

Lack of professional help

This challenging transition is widely discussed in local birth trauma and postnatal depression and anxiety support groups that proliferate on Facebook. It seems the difficulty finding professional help means women are having to create and seek out their own sources of support.

Some women told RNZ they experienced birth trauma and mental health issues after the birth because of failures by their doctors or midwives during the delivery. These include cases of severe perineal tears because a midwife was reluctant to do an episiotomy, or didn't want to call a specialist for help. Some rural women described not being able to get help quickly from a tertiary hospital when things went wrong.

But Sargent says most women she sees struggle with the "increased medicalisation of birth, which can lead to cascading interventions, a sense of powerlessness and decreased autonomy".

In her experience, more medical intervention often equates to more trauma and, in New Zealand, medical intervention is on the rise. Between 2009 and 2018 there were fewer "spontaneous vaginal births", more instrumental births, more caesarean sections and inductions almost doubled, according to Ministry of Health figures.

Sargent believes many of these interventions are causing trauma. "Oftentimes [it's] those interventions that are pushed on women, in the name of safety, that are the very thing that ultimately lead to birth becoming traumatic and in fact being unsafe for the woman. So really, in my experience it's the application of these unnecessary interventions that are causing a lot of the damage out there."

One way to counter this is for women to be given the opportunity to talk about their birth and any trauma they experienced, but it's often not a priority, says Sargent.

"When we enter new motherhood, we are so focused on just getting through, just coping with the sleeplessness, the recovery from surgery and exhaustion, the learning how to parent a new baby, that we just stuff our own stuff down."

But it's the best time for these discussions to take place, she says.

"I'm just so often shocked that women who come to me - and often they don't come to me 'til they're pregnant again, because it's not 'til then when they are terrified at the prospect of giving birth again - that they realise how damaged they were in their first birth experience."

Barber agrees that some women need to be offered a chance to debrief about their birth to help recognise trauma or other mental health issues that arise. Because birth trauma is so subjective, it can be hard for health professionals to recognise.

"Many women are very distressed after their birth for one reason or another but we're not always that good at knowing which ones those are."

Sometimes it's obvious to everyone in the delivery room that a birth was traumatic or scary, but in other instances it might not be because a procedure is simply viewed as "routine" by medical professionals yet has a huge impact on a patient, she says.

"Sometimes that has to do with the information they have; how they might have been treated; and sometimes also about their own backgrounds. People who've had experiences of trauma before, like childhood sexual abuse, might be more vulnerable to feeling out of control at that time, even when other people around them might think everything is fine."

Ultimately, more investment is needed in perinatal mental health, as well as more psychologists, says Barber. That takes time, however, so specialist online tools may plug some of the gap for women seeking support.

Waikato University has created an app, Positively Pregnant, to support emotional wellbeing in pregnancy. "It's for prevention and early intervention, for figuring out what works for you to help with those moderate levels of stress or mood problems, and also how to get help when you need it," Barber says.

Although there's little research on whether online tools can provide the same level of support as a real person, studies have shown that online cognitive behaviour therapy tools for teenagers can be just as good.

Sargent says more research is also needed into why so many women experience birth trauma, because simply investing more into support services is "an ambulance at the bottom of the cliff".

She says midwives need more funding and better support too, and women need to be given the encouragement to give birth in primary birth services and at home.

"Even though we've got this good sort of system of maternity care available to most women, it's becoming less and less available. Midwives are leaving their positions in droves. They're not being paid well enough. They're not being supported enough. And even in the hospitals there's understaffing so midwives are burning out and they don't have the time or the energy or the emotional capacity, I think, sometimes to be able to give women all the time and support they need during the pregnancies."

Kate Hicks says educating expectant mothers about birth trauma is also key, as is offering them increased support if they want it.

She'd like to see all new mums given access to at least six counselling and women's health sessions, such as pelvic physiotherapy, as part of the standard maternity care package. "I'm certain that if we get that, if every person has access to that kind of support, I'm certain that we will see mums, babies, whānau and even our wider communities would have so many more positive experiences and whānau would thrive as opposed to just kind of surviving."

Health Minister Andrew Little admits perinatal and maternal mental health needs "serious attention". And he knows the biggest gap in mental health services overall is those needing mild to moderate help.

Filling a gap

"We are putting the money in but we're filling a big gap, and we have a four to five-year programme to fill that gap."

But why hasn't the government responded to the Perinatal and Maternal Mortality Review Committee's (PMMRC) five years of calls for urgent funding?

It has, Little insists. "We set up a pilot at the end of last year at Lakes District Health Board where mothers who are in households where there are risk factors - could be domestic violence, alcohol and other drug addiction - are getting an intensive level of care."

Andrew Little. Photo / RNZ, Dom Thomas

This was part of a $242 million maternity care package announced in Budget 2020 to be rolled out over four years, he says. "To anyone who says nothing is happening is simply wrong."

Labour's 2020 election manifesto promised "more respite beds for maternal mental health". So how many have been added?

"In the eight months since the election? I'm not sure that many have been added, or that any have been added at all," says Little - and he admits there's no target number or timeframe for them.

"But we have an ongoing programme of investment across mental health, including perinatal mental health, and the programme continues to be rolled out."

Reducing the suicide rate for pregnant and new mums is a "top priority", he says, but a shortage of mental health professionals is also hindering progress, so the government is working on getting existing health care workers the training they need to move into this space.

"And that is just taking time, it's just a reality."

Meanwhile, a survey, like the one recommended by PMMRC in 2018, of perinatal mental health services is under way and once it's done the PMMRC's recommendation to form a perinatal and infant mental health network will be considered, the Ministry of Health says.

But access to community mental health services, which will help pregnant women and mothers, is improving, says Ministry of Health deputy director of health, systems improvement and innovation Clare Perry.

"There are new integrated primary mental health services accessed via general practice being rolled out across the country. The roll out of these free mental health and addiction services is well under way, with over 160 sites in operation as at the end of January 2021."

"As part of these services, sessions with health improvement practitioners or health coaches, who are based in GP clinics, will provide the opportunity for early detection of post or perinatal depression and access to free counselling and mental health services."

On top of this, primary mental health and addiction supports, including Kaupapa Māori, Pacific and youth-specific services, are being rolled out around the country, she says.

"These will make a difference for people with post or perinatal depression. But this will take time before the flow-on effect is realised for specialist services," Perry says.

Let down by system

It's time that Sarah doesn't have. She's pregnant again and feeling anxious, especially about the impending scans, where she fears she'll relive the horror of discovering her older child had a growth on his lungs. Despite her history, her doctors, knowing it's extremely hard to get into perinatal mental health services, haven't bothered making a referral this time around.

Her DHB told RNZ its Perinatal Mental Health service does not help women struggling with the death of a baby, unless a client's previous loss is affecting a subsequent pregnancy.

Instead it refers women to either an external organisation that provides grief counselling or to the DHB's adult mental health service.

Sarah and her family are now getting much-needed support and counselling from a charity that helps families with sick children. And although she feels hugely supported by the charity, her family and her wider community, she feels let down by the public mental health system and worries about other families facing difficulties like hers.

"'It's not really good enough for people to not be getting the support that they need.

"We're meant to be having this push for better mental health care in this country but I haven't seen any of that. I've seen a decrease in services. I've almost been completely unable to access perinatal mental health."

She doesn't want finger pointing, she wants change.

She's in disbelief how difficult it's been to get help throughout their ordeal. "If someone like me can't get that support, who is worthy of support? Do you have to be on death's door to be deemed helpable?"

*Names have been changed