For those who lose a baby pre-birth or shortly after, grief is often unacknowledged. Those who know are trying to change things.
Roses surround the balcony outside Kelly’s bedroom. There’s five rose bushes, each planted with the remains of a lost baby. For four years she and her partner have been trying. First naturally, then with ovulation induction, and finally with IVF. So far, the pregnancies have led to miscarriages and stillbirths – five children marked by roses that she sits next to often.
Jasmyn is over four years into her fertility journey. From her neck hangs a delicate necklace given by her mum. It’s a glass pendant with a poppy seed suspended in its centre – the seed is the size of a baby she lost to miscarriage. “We talk about him using his name,” she says. Jeffrey is buried in the backyard under a lemon tree.
Manaia passed away just two days after he was born. “That was the first time I even knew about babies dying, and he was my baby,” says his mum, Pania. Though she was numb, she knew what would happen next – a tangihanga. With her whānau she returned Manaia home to their marae. The tangi made Pania feel like she knew how to be and where to go – “it was a process that really supported me.”
At 23, Kez was given medical advice to try for babies as young as possible, due to health conditions. She’s almost 29 now, and has been trying for five years, but “I’m just not falling pregnant at all.” She’s felt a lot of sadness and hopelessness, but “the further along this journey I get, the more I don’t talk to people about it.”
Alice has a visible baby bump, and she can feel the baby moving around. Her morning sickness feels like a badge of honour, and she’s happy, but there’s other things on her mind too. The baby is due on the week of an anniversary of a miscarriage. That baby was lost about eight weeks in, and “I regret not fishing it out of the toilet,” she says. “I wish I’d buried it.”
Grieving is hard, and it’s even harder if your loss isn’t acknowledged. While most women perceive that a baby is lost when a miscarriage happens, society doesn’t reflect that. For miscarriages (babies lost before 20 weeks), there is no birth or death certificate from the state, or legal requirements for obituary notices or memorial services. Sometimes nothing can be saved to bury or cremate. Medical terminology refers to an “abortion” and the baby as “tissue” or “product”. This is even more true of embryos which fail to embed during IVF, and queer couples who struggle to find sperm donors, egg donors or surrogates. These losses can be invisible, and there are no social rituals for how to mourn or acknowledge them. For babies lost later – either born still, or born unable to survive more than a couple of days outside the womb – it can be easier for society to support grief, but the loss is still under-recognised. For example, the women labouring stillbirths are placed in maternity wards next to people giving birth to healthy, live babies.
The inability to have babies, or the hard path to get there, is often regarded as an insignificant medical event rather than a life-changing experience. Though somewhat missing from public life and conversation, these losses are not uncommon. Te Whatu Ora estimates that 700-900 families lose a child every year through stillbirth, foetal abnormality, or Sudden Unexpected Death in Infancy, and another 13,000+ are affected by miscarriage. Infertility – defined as not getting pregnant or being able to carry a baby for a full term – is experienced by about one in four New Zealanders. And there’s almost 200,000 LGBTQI+ adults in New Zealand who may not have the biological ingredients for a baby. If you think you don’t know someone with these struggles, it’s because they haven’t told you.
Rosemary Westley was handed her stillborn daughter Holly in a paper shawl that resembled the paper towels found in public toilets. Afterwards Westly wrote, “It was like nobody had ever had this happen to them before. I found that there was no support and no information on having a stillborn baby.” It was 1986, and a few weeks later Westley was compelled to do something about it, so that others wouldn’t have the same experience. She spoke with the hospital chaplain and together they held a meeting for bereaved parents. Twenty couples showed up, and the meeting became monthly. Today, Westley’s legacy is a nationwide network, Sands.
“Our mission really is to provide high quality support to bereaved whanau and health professionals and to educate the public about baby loss,” says Melanie Tarrant, Chair of Sands NZ. Often Sands (or similar groups like Baby Loss NZ) are the only service available to parents whose babies have died – health professionals often refer parents to Sands, and Sands provides training to midwives and information and resources to hospitals. Sands facilitates peer support groups, online support groups, provides information to parents and medical staff. Sands is made up of 74 volunteers, bereaved parents themselves, in 20 groups around the country. “A big part of it is wanting to give back because of the care that we received from Sands,” says Tarrant. The only support Sands receives from the government is to print pamphlets.
Tarrant thinks the care for bereaved parents at hospitals has improved since Westley was handed her baby in what was essentially a serviette, but “that is inconsistent across the country. It often depends – is there a Sands group in the area? Or is there a dedicated midwife?” She calls it a “postcode lottery”.
According to a report from Te Whatu Ora, in 2023 there were only four or five perinatal loss hospital midwife specialists across the country. The report says that most staff had no training on how to care for bereaved parents, and support was patchy, though parents did speak positively about the services offered by non government organisations including Sands. In the report, parents are quoted as saying they felt abandoned, like staff were going through “business as usual” and that losing their baby was treated too clinically and lacked compassionate communication. One parent said “we felt like we were going through an invisible experience.” Many women said being placed in the maternity ward after losing their babies was deeply traumatising, with one saying, “We heard babies crying and it made it really difficult for us.” Mostly, the pēpi were treated with dignity, but in one case parents were given the body to take home in an envelope box.
The report is part of preparations towards a national perinatal bereavement pathway – a standardisation of care which Tarrant hopes will mean everyone receives high quality, consistent bereavement care when babies die, no matter where they are. Sands is another part of its development, meeting with Te Whatu Ora every three months. The pathway is a result of recommendations from the perinatal and maternal mortality review committee’s 2019 report, but is still years away from being implemented.
In the meantime, Sands supports families throughout the country each year. Tarrant remembers when she lost her baby Kate, she was “barely functioning” when a Sands member came to visit. “To be able to talk with someone who had been through this several years ago gave me hope that one day I would be OK, even though I didn’t feel that now.” The same support person came back when Tarrant lost baby Zach. “I always remember that she said to me, do you have some photos of him? I’d love to see him. And I think nobody had asked, nobody had asked me, could they see the photos of Zach. So to be able to share those with her, it was just so profound. And so now, when I’ve gone to support bereaved whānau, I always say, have you got some photos? Would you like to share photos with me?”
Helping make memories and keepsakes, like photos, is one area of focus for Sands. Life memory boxes are delivered to hospitals and families. If it’s possible, they encourage people to spend time with the body of their baby – bathe them, dress them, hold them, introduce them to family and loved ones, take them home or to a special place. You can create keepsakes like hand and foot prints, or taking a lock of hair. Memories can also be made during pregnancy – by taking trips, getting a stomach cast, and keeping ultrasound images. Memories can be made yearly on anniversaries. Every May, Tarrant bakes a birthday cake for Kate, and sings happy birthday to her with her living daughters. In October, the ritual is repeated for Zach. “Even though they’re not here, they are still very much a part of our family.”
Another way Sands honours lost babies is by providing certificates of life. These are primarily for babies who die before 20 weeks and so aren’t recognised by the state. Sands provides parents with an A4 certificate of life, with space for a photo or hand and footprints. While Sands does “what each group can”, Tarrant urges friends and whānau of bereaved parents to reach out too. “I know people feel worried that they might upset us by mentioning our baby, but nothing can make us more upset than that a baby has died. So when you talk about them, that tells us that you’ve remembered them and you’re acknowledging them, and that is so precious to us as bereaved parents.”
When Pania Mitchell’s (Ngāruahinerangi, Ngāti Rakaipaaka, Te Aitanga o Hauiti) boy Manaia passed away just two days after he was born, he was acknowledged with a tangihanga. The ceremony brought Manaia home, tying him to his whānau and ancestors. It helped Mitchell to grieve, and brought her comfort. “It was a way to share in the sadness of his dying and of being supported by everybody who loved me and my husband,” says Mitchell.
Michell has also had a miscarriage at 15 weeks – but that is not something she did, or expected to have a tangihanga for. She knows that babies lost before 20 weeks “don’t get acknowledged as the same thing – I’m not OK with it entirely”. She doesn’t necessarily think there should be a tangi, “it’s an unsure situation”, but perhaps there could be something.
Tess Moeke-Maxwell (Ngāi Tai ki Tamaki, Ngāti Porou), palliative care researcher at the University of Auckland, is not aware of any specific ritual of loss and mourning for infertility or miscarriages in te ao Māori. That’s not to say they don’t, or never existed, “colonialism has robbed us of so much,” she says. Many people are estranged from their cultural roots, and many have eclectic spiritual beliefs. Without specific rituals there’s still tikanga – primarily karakia, which is used to lift tapu and petition divinities and tūpuna to come and help. There’s also waiata – “these are all rituals,” says Moeke-Maxwell.
Moeke-Maxwell and her whānau were forced to adjust the structures of tangihanga when her mokopuna died during a level four lockdown in 2020. Te Minaora had been diagnosed with a rare heart disease while in vitro and was born on April 5, 2020. She lived just “one perfect day”. On that day she was named after tūpuna and wore a tiny white feathered korowai which symbolised the protection of tūpuna. Whānau outside the household bubble met her through Zoom.
After Te Minaora died she was washed and dressed by her mother, Racheal, who spoke and handled her as if she were alive, as is custom. Then Racheal lovingly placed Te Minaora in her waka tūpāpaku. Karakia followed. Usually Te Minaora would have then been taken to her father’s whare tūpuna and been mourned there for several days. Instead, this had to be done at home, with some whānau attending through the TV screen. Te Minaora’s body had to be kept in a temperature controlled room at a funeral directors’ until level three, when a small tangihanga could be held. It did not sit well to leave the body alone, but options were lacking. Te Minaora was laid to rest with her paternal great grandparents.
Although things had to be done a little differently, Moeke-Maxwell later wrote, “It all felt so natural and so perfect.” When we speak, she doesn’t suggest applying tangihanga to infertility or early baby losses, but does highlight the importance of honouring roimata and following tikanga, like using karakia and waiata.
In vitro fertilisation (IVF) arrived in New Zealand in the early 80s. A medical miracle, sure, but not one without its difficulties. People tend to assume IVF almost always results in a baby – but IVF success rates from 2021 show a “take home baby” success rate of just over half after three rounds. In its early days, it was even lower. The parents of the very first IVF baby born in New Zealand had just a 6% chance of success. Last month, she turned 40, but thousands of gametes and embryos haven’t even gotten close.
“When you tell someone that you’re doing IVF, they get excited and they’re happy for you, and they think that guarantees a baby,” says Jasmyn. “I have done three rounds of IVF, and we do not have a baby. We have had three losses in total. We’ve had two other embryos that haven’t taken. I have taken 50 of my eggs out, and we are no closer to having a baby. IVF hasn’t worked for us. We’ve found out more things that are wrong with us at every turn.”
Even without considering failures, IVF is difficult. The process itself is demanding and onerous – numerous appointments, blood tests, constant monitoring, surgeries, collections, medications, more medications that affect hormones and mood, implantations and more tests to determine if they’re on their way to becoming a baby or not. Treatments can be undignified, embarrassing, invasive, time-consuming and stressful. Jasmyn has described it as a full time job – one with an extra layer of emotional toll. On top of that it’s expensive and criteria for public funding is tight. To be eligible for publicly funded IVF, couples with a known cause of infertility must have been trying to conceive for at least a year, or if there is no diagnosed reason, at least five years. The woman must be under 40, her BMI under 32, and be a non-smoker. Different areas then have additional requirements around other children and the male partner. If couples meet the criteria, there’s an 18-month waiting list. Then they can have two rounds of IVF paid for. If they don’t qualify, the cost of one round begins at $12,000. After all those years, there could easily be no baby.
“It can become quite all-consuming for people, and for some people, this journey can take many, many, many years,” says Lydia Hemingway, CEO of Fertility New Zealand, the largest support, informational and advocacy group for infertility in the country. Fertility New Zealand was formed in 1990 by joining regional infertility societies which had cropped up to support people going through IVF. A group including embryologist John Peek, one of the pioneers of IVF in New Zealand, saw the need for more structure and support. “There had previously been bits and pieces happening, but this was the formal part of our organisation as a national charity,” says Hemingway. Fertility NZ gives people information about infertility and fertility treatments, runs regional support and contact groups, and lobbies the government for improved access to treatment. All this support is important because “they’re struggling, because what they’re going through is very, very real and very, very emotional for them,” says Hemingway.
One of Fertility NZ’s peer support groups is called Childless After Treatment. It’s for those who have decided, or been forced, to stop fertility treatment. To draw the line and instead commit to a life without children. “It’s really, really hard making that decision to stop treatment. It’s a really difficult decision for people,” says Hemingway. In groups like this, “you’re talking with people who understand what you’re going through… it’s so valuable and important for people. Because even when you’ve got the most amazing friends and family that you can talk to, if they haven’t been through it, it’s just different – they just can’t understand quite to the same level.”
That lack of understanding can sometimes be a lack of acknowledgement. “That’s the thing with infertility. People don’t come around,” says Winnie Duggan, a celebrant who was an infertility counsellor for 22 years. “There was no announcement in the paper that so and so has died, and so people don’t come around with baking, or send a card, and you don’t have a funeral. You’re dealing with it so much on your own – often month after month, because it keeps happening.”
When she was a counsellor, people would tell Duggan they didn’t know what to do with their grief. There were no set rituals to mourn lost embryos or miscarriages. She would encourage them to make their own – suggesting things like writing little notes on paper and burning them, taking leaves down to the steam, throwing them in and watching them float away or writing messages in the sand at a beach and watching the waves come and take them away. One of her patients lit a candle each time she had an embryo placed, and kept it going until she knew the embryo hadn’t taken. Then she’d snuff it out. “That was her way of physically embodying what was happening in her body, which was very powerful,” says Duggan. It was during this time that Duggan realised the value of ceremony to mark “these changes for people and the losses and the unspoken stuff”
In 2000, Duggan started organising public ceremonies to acknowledge the losses connected with infertility – childlessness, embryo loss, secondary infertility, baby loss and loss of dreams. Seeds of Hope ceremonies continue today, usually yearly, in Wellington, Auckland and Christchurch. The ceremonies are not religious, but they are sacred. Led by celebrants, they’re communal but intimate with anywhere from six to 30 people. Celebrants choose music, read poems and speak about loss. The locations are carefully selected, and decorated with flowers and draped fabric. “It lifts it out of everyday stuff, and makes it a wee bit more special. In that sense, it sort of holds that grief,” says Duggan. The ceremonies make intangible losses more tangible and allow people the space to recognise loss and move through grief.
There’s a moment where participants are given tealight candles with a sticker on the side where they can write the name of their baby, or embryos. “Sometimes people put nine candles up for the nine embryos they’ve lost,” says Duggan. “Or one, with a name for the baby that they lost, or the pregnancy they lost. Sometimes it’s a loss of dreams, or a loss of confidence, or a loss of hope.” They carry the candles to an alter-like table at the front of the room.
“It’s not an easy ceremony to come to,” says Duggan, “it’s going to be an emotional time, it is hard because it’s stuff that’s real heart stuff.” Afterwards, it’s time for a cuppa, kai and chatting. “It’s like kai at the end of a tangi – it’s a really nice way to bring you back into normal life, as opposed to the tapu sense of the ceremony.” The cuppa can go on for a good hour – “it’s a chance for people to connect with other people who they know understand at some level what they’re going through.”
Duggan says mostly women attend ceremonies, and some bring “reluctant” partners. Often partners will understand the value of the event once they’re there – “it expresses some of their loss that they haven’t been able to put into words. And they also experience that connection with their partner”. After ceremonies people can feel wrung out, and they can feel a sense of closure.
For those who want to have a private ceremony, Duggan has co-authored a book, Be fertile with your infertility. “Our hope in writing it was for someone who had been through a miscarriage or some baby loss or embryo loss that they had permission to create their own ceremony if they wanted to.” She says that these losses can be just as significant as any other deaths – “it’s a huge loss, all embodied in one little embryo.” Duggan believes that by honouring their grief, people can heal.
Sunglasses have been an essential part of Jasmyn Telfer’s ongoing infertility journey. She needs to walk to process things, and “100% of the time” she’s crying. “I cry a lot,” she says, “just not in front of other people.” A little of her crying, has been shared on her podcast, Infertility Sisters. The pod started about four years ago, when she and a friend were both having trouble conceiving. Telfer had been to the doctor for guidance on getting pregnant and was given a midwife directory, some folic acid, “and sent on my way”. The friends learned there is much more to conceiving than simply having sex, and they wanted to share their learnings with others through the podcast. Telfer never anticipated it would follow her now four year journey which has included IVF, three losses and is now heading into egg donation.
Nor did she think the podcast would reach 66,000 downloads and that so many people would message her that she’d struggle to keep up with replying. “It’s been really quite overwhelming,” says Telfer. On the pod she’s talked to ordinary people going through infertility and treatment, and experts like embryologists, obstetricians, gynaecologists, nutritionists and an acupuncturist. The most emotional episodes are in season three, when Telfer miscarried. “To be honest, those episodes are our least downloaded episodes, but they’re the most important episodes,” she says. People have told her they have skipped them because they were “too sad” only to find themselves returning later, when they miscarried.
Telfer is “an open book, so nothing’s too personal or TMI for me”. She thinks that because of this, and the platform she created, she received a lot of support when she miscarried, and yet “it still wasn’t enough – there’s still a lot of stigma there.”
“I’ve experienced a variety of loss, and being open has helped me, but it still was a very, very lonely place where you feel like you don’t know where to turn or who to turn to what the right answers are and where to get that support from. It’s not there. It’s not obvious.”
One of the podcast’s followers dropped a Sands support package in Telfer’s letterbox, and from there she joined a support group. “They were a massive support for me.” Her mum, who once had a misscarriage herself was also a huge support. “What she wished they did differently down the track really helped me make some decisions that I may not have made in the moment.” That’s what led her to bury Jeffery in the backyard, and plant that lemon tree over him.
In season four, episode seven of Infertility Sisters, there’s a voice which is rarely captured in conversations about infertility. That of a male. “It took a long, long time to get him to come on, because he is the opposite of me. He’s very shy and private. But it got to the point where we needed that representation on there – it’s hard enough for anyone to talk about, and in a society where men don’t talk about their emotions, really hard.” Corey, Telfer’s husband, agreed to be on the podcast after noticing how much the podcast connected with, and helped people through their journeys. “I thought it was just going to happen,” he said on the podcast, discussing their fertility struggles. He talked about the process of having his sperm checked – something that is often dismissed as being easy – and while “no doubt the females have the worst end of the deal physically,” he said, “I found the whole process anxiety inducing – including this.”
IVF did not work for the Telfers. Now they’re looking into using someone else’s eggs to help them have a baby. But four years of trying have taken a toll. “There have been days where I haven’t been able to get out of bed, and that’s the first time that’s happened in my life,” says Jasmyn. It took a while, but the pair learned to “still live our life through this.” They make plans to look forward to, and when treatments fail they book a couple of days away, somewhere different each time. “We’ve said that once we have our baby, we’re gonna go to all those places with our baby and turn it into a positive thing. One day.”