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The memory box that Bethany made for her baby
The memory box that Bethany made for her baby

SocietyApril 22, 2018

The loneliness of miscarriage

The memory box that Bethany made for her baby
The memory box that Bethany made for her baby

Twenty thousand women experience a miscarriage every year in New Zealand, a country failing to provide adequate medical and emotional care, writes Kathryn Van Beek.

Pregnancy loss and infertility counsellor Megan Downer is gearing up for Mother’s Day. The days before and after Sunday 13 May will be some of the busiest of her year. For many of Downer’s clients, dates and numbers have special resonance. They are committed to heart and carried like talismans, pieces of evidence, or maps of buried landmines to avoid. Date of miscarriage. Due date. Age the child would have been, if it had lived. Terminology is important to Megan’s clients too. Some medical specialists use terms like ‘products of conception’ and ‘spontaneous abortion’. Others refer vaguely to ‘pregnancy tissue’ and ‘lost pregnancies’. It’s only when you talk to women that you hear the word ‘baby’. And the word ‘death’.

Bethany Carter (not her real name) settled down in a small Northland town where everyone knows everyone’s business and are not afraid to offer opinions. But a former employer got a blunt response when he bumped into her and suggested that it might be time for baby number two.

“I’m actually pregnant at the moment,” Bethany said, “But it hasn’t lived.”

At nine weeks into her pregnancy, Carter had just learnt that the foetus no longer had a heartbeat. She’d had a missed miscarriage – also known as a silent miscarriage – which is when the foetus dies but remains in the uterus, with few symptoms to indicate anything amiss. As in Carter’s case, these miscarriages are often picked up during routine scans.

Carter’s midwife referred her to Whangarei Hospital to discuss her options. “It became apparent to me that from that point I wasn’t in her care anymore,” Carter says. “I thought, ‘I’m still pregnant, my baby’s just not alive.’ I felt let down by the system.”

There are typically three options for completing a missed miscarriage. Women can opt for dilation and curettage surgery (a D&C) to remove the pregnancy tissue. They can take the drug Misoprostol to start labour, or they can opt for expectant management – waiting, sometimes weeks, to pass the tissue naturally.

Carter chose the latter option. “It’s a weird period of time when you’re still pregnant but you know your baby’s not alive. When it finally happened, it was three and a half hours of increasing intensity. It really did feel like I’d been through a birth on my own, but there wasn’t any follow-up like after you’ve had a baby.”

Although the majority of women choose midwives as their lead maternity carers, midwives are not paid to provide first trimester miscarriage care. This does not appear to be widely-known amongst women, who are also not always aware that until they’ve signed the paperwork with a midwife, they are essentially under the care of their General Practitioner (GP) – if they have one. Carter, who had only lived in her town for two years, didn’t have an existing relationship with a GP, and she didn’t feel that mid-miscarriage was an appropriate time to start shopping around for one.

GPs are not always experts on miscarriage, and with no help available from midwives, women who experience early pregnancy loss often feel as though they’ve slipped through the cracks of the medical system. “I felt left on my own,” says Carter, who also struggled to find emotional support. “Medical professionals don’t talk about it as a baby, it’s the ‘products of conception’. It makes you feel that how you’re feeling isn’t valid, and that you shouldn’t be feeling this level of grief for a product. It isn’t easy to know where to turn to for specific miscarriage help.”

When Bethany found out her baby had died she released this flower into the ocean

Miscarriage is horribly common. It occurs in one in four confirmed pregnancies, yet its prevalence is glossed-over in much of pregnancy literature – just four pages of the 432-page tome The New Zealand Pregnancy Book cover early pregnancy loss. In wider society pregnancy announcements are commonplace – baby loss announcements much less so. There are established cultural rituals around pregnancy and birth, but none around miscarriage. All of this silence contributes to a sense that miscarriage is rare or somehow shameful.

Primary school teacher Sarah Floyd was thrilled when she discovered she was pregnant with her first child, but the day before she was due to meet her midwife for the first time, she began experiencing frightening cramps. Floyd’s calls to the midwife went unanswered as she struggled to access help. She went to her GP, then to a sonographer and finally to Waikato Hospital as her miscarriage progressed. The sonographer and hospital staff asked to speak to the midwife, who never replied to Floyd’s calls. At no point did any of the professionals liaising with Floyd let her know that she wouldn’t officially be under the midwife’s care unless she had signed registration papers. “It was only when I placed feedback on her Facebook page that she made it clear,” says Floyd.

Months later, Floyd still feels let down. “When you’re pregnant everything’s so new and you don’t know what’s normal and what’s not, and that’s when you need support the most.” She wishes she’d had better information and more streamlined care. “You feel as though you’re being tossed around a little bit when all you want is to get help straight away.” Floyd was also shocked to discover that miscarriage is so common. It was only after her experience that she learnt that many of her friends had been through it too. “I would say in Māori culture it’s tapu to talk about the dead. No one had openly discussed it. I really had no idea.”

Downer says that because miscarriage is often so unexpected, it can throw women and their partners into crisis. “Quite often couples are shocked by miscarriage. They were expecting to have a baby – they were not expecting to lose the baby. Their lives are turned upside down.”

Rina Gates would agree. She and her husband already have four girls, and when she became pregnant again the developing baby quickly became part of the family. She and her girls began an evening ritual. “They’d rub my puku and talk to the baby. They wanted their voices to be the first ones that baby heard.”

Gates wasn’t too concerned when she experienced some light bleeding at around 12 weeks, but when she went in for a scan the next day there was bad news. “The sonographer said, ‘Sorry hun, but it’s gone’. Everything felt like it was caving in, crumbling.”

The feelings of grief were compounded by inept medical care. The hospital initially lost her referral, and when she finally did hear from them, it was by letter. “It was lucky my daughter checked the mail. I had to be there by 2pm that day!” After so many delays, Gates didn’t end up having surgery for almost two weeks. “Still having baby in me was one of the hardest parts for me. I felt like I was a walking tomb.”

Gates wanted the remains to be returned to her immediately after the surgery, but despite making her wishes clear during the consultation, on the day of the surgery a nurse asked if the hospital could take the foetus for testing. Gates declined, but later had the same conversation with a second staff member. “She said, ‘It’s the size of a bean’. I said, ‘I don’t care, it’s my baby’.” Gates then had the conversation a third time. “The surgeon said he’d like to take the products away for testing. I said, ‘I have already said no three times’. I also thought referring to it as ‘products’ was insensitive.”

As soon as she awoke after surgery Gates asked to see the remains. “I looked at my baby – I felt I had to. You could see baby’s arms, fingers, eyes. It confirmed for me that my baby is not a product. It’s not tissue. It’s a baby.”

In some parts of England, miscarried foetuses are cremated before being returned to the parents. Here in New Zealand, the first-trimester foetuses that are sent for testing are made available for collection, often many weeks later, in specimen jars. This is not appropriate for those bereaved parents who wish to perform rituals such as burial.

The Gates family held a burial at their urupā (family cemetery). “I believe baby was a boy, so he’s got a little motorbike and a little truck. A friend gave us a candle so every night we light his candle and have karakia,” Gates says. The rituals have been healing, but the experience has been a lonely one. “I spent so many sleepless nights on Google. I didn’t know who to turn to or where to go to ask questions.”

Gates’s husband also struggled emotionally, but his request for bereavement leave was declined by his employer. Parents are entitled to bereavement leave if their child dies, but The Holidays Act does not define what is meant by the term ‘child’, creating ambiguity as to whether or not miscarriage applies. A Ministry of Business, Innovation and Employment (MBIE) spokesperson says, “Taking bereavement leave for a miscarriage is neither explicitly ruled in or out in the Holidays Act. It is important to note that when an employer considers a request for bereavement leave, they are obliged to consider this request in good faith.” Labour MP Ginny Andersen is in the process of taking a Member’s Bill to Parliament with the intent to clarify this section of the Act and ensure that people who experience miscarriage can take bereavement leave.

Scan of Maisie’s hand

Early pregnancy loss is not only minimised by our cultural practices and our legislation. Downer says that even well-meaning friends and family members can trivialise the experience.

“There are comments like, ‘Just as well you didn’t meet them,’ and, ‘Just try and get pregnant again’. Miscarriage isn’t really accepted as a significant loss by society, friends, family and even medical professionals. And because it’s not always recognised by others, the implication is that you shouldn’t be feeling this way.” Downer adds that although women go through the physical ordeal of miscarriage, partners often grieve and need support too. “Partners can be quite traumatised by miscarriage. They see the woman get rushed away and they’re sometimes concerned that they might lose them.”

David Barrett (not his real name) found himself in that position when his wife faced a life-threatening pregnancy. The couple knew from the seventh week that the pregnancy wasn’t progressing normally, but no one told them what to do if miscarriage began spontaneously. When they woke one morning to find the bed soaked with blood they went to their GP who immediately called an ambulance. Barrett followed helplessly behind as his wife was rushed to North Shore Hospital, where poor communication added needless stress to the two-day ordeal. At one point his wife was left alone without food or drink for 13 hours as her surgery was delayed. “It was a bit shit,” Barrett says. “You expect to be kept informed.”

The pregnancy is suspected to have been a molar or partial molar pregnancy – a growth of abnormal, potentially cancer-causing cells. These occur in about one in every 1,000 pregnancies, and have to be monitored carefully in order to protect the mother’s health. Months later, Barrett and his wife are still dealing with the stress of regular tests to check that cancer isn’t developing. Barrett has taken on the role of emotional ballast for his wife. “From my perspective I’ve focused on her and supporting her through ups and downs.”

Such up and downs – including strong feelings of anger, resentment and shame – are normal after miscarriage, Downer says. “There’s a belief that women should have babies in order to be ‘successful’ in life and that motherhood is really important, but some women don’t want that and for other women that is not possible. Women will often express that they don’t feel like they’re a proper woman because they haven’t been able to do what they thought they should be able to do.”

Mother-of-two Kate Everton knows the feeling. She found herself in therapy following her miscarriages. “Part of the grief I wanted to explore was that I might not have another kid. I felt a real sense of failure towards my son that I couldn’t provide him with a sibling.” With no publically-funded counselling available for parents bereaved by miscarriage, Everton paid for therapy herself. “That was about two hundred bucks a hit. But I needed to do it.”

The majority of miscarriages occur within the first twelve weeks of pregnancy, but it’s not uncommon for miscarriages to occur up until 20 weeks. (After 20 weeks a pregnancy loss is referred to as a stillbirth.) As she struggled to complete her family, Everton had three first-trimester losses and a second-trimester loss, which was picked up during the 20 week scan. Everton recalls sitting with her husband in the waiting room, excitedly finalising their list of baby names in expectation of the gender reveal. Minutes later, the sonographer gently explained that there was no longer a heartbeat. “I remember feeling like the room was crashing. It felt like everything was just closing in on me.”

Everton’s midwife referred her to Christchurch Women’s Hospital. After a short labour assisted by a specialist nurse, Everton’s daughter Maisie was born.

“With the first trimester miscarriages the process felt a bit generic,” Everton says. “But with Maisie, it was different. Everything that happened through Maisie’s life and birth was amazingly supportive.”

Hospital staff took photographs and hand and foot prints of Maisie, which Everton put in a ‘memory box’ donated by Stillbirth and New-born Death Support (SANDS). The box came with a booklet for recording Maisie’s weight and size, and information about where to find emotional support. These thoughtful touches meant a lot to Everton. Being treated with dignity by medical professionals also helped with the grieving process. “My midwife popped up after I’d delivered to check on us and see the baby, and she called me a couple of days and a week after to check in. And the nurses were also some of the most incredible people. They must have the biggest hearts to do that day in and day out.”

Maisie’s memory box

After undergoing immune suppression therapy, Everton conceived again and carried a daughter to term. “Now that we’ve finally got our rainbow baby, it makes it easier to reflect without it being so raw,” Everton says. “I intend to be really open and honest with both kids that they have brothers and sisters that didn’t make it and they’re still part of our family. They were still my babies.”

Every year around 20,000 New Zealand women experience miscarriage, which can be physically and emotionally painful. Instead of supporting these women we fail to provide basic information about the physical process of miscarriage, fail to provide counselling and other emotional support, fail to provide bereavement leave, and fail to handle the foetal remains with dignity. We are failing to deliver an appropriate standard of care.

Perhaps some of the rituals emerging around second-trimester miscarriage, such as the gifting of memory boxes, could be applied to first-trimester miscarriage to help soften the emotional impact for the bereaved. This does not need to be a burden on the medical system. It could be coordinated by the same friends and family members who would otherwise have arranged the baby shower.

We could also learn from other parts of the world. In Japan, those who lose pregnancies can participate in Mizuko Kuyō ceremonies (memorial services for the “water children” who die before birth), and offer food, flowers and incense to Buddha on behalf of the departed. It is also common for mourners to place stone Jizō statues on temple grounds or in family gardens to ensure their lost children are protected (in Buddhist tradition, Jizō is the guardian of the souls of miscarried and stillborn foetuses). This kind of acknowledgement of loss can help with the healing process.

Some improvements to the standard of care, such as offering grief counselling, or funding midwives to provide first-trimester miscarriage support, do have costs attached. Others, like making miscarriage information as accessible as pregnancy information, simply require the will. Has miscarriage been ignored because it has been seen as a women’s issue, because it straddles the taboos of death, sex and menstruation, or because we simply don’t like to confront the fact that unborn babies spontaneously die every day of the week? Whatever the reason, it’s time to deliver holistic, compassionate care to those who endure it.

Not everyone will experience miscarriage as a trauma or loss, but for the women struggling this Mother’s Day, Downer has some advice. “Be kind to yourself.” Then she adds the words that many people bereaved by miscarriage never hear. “Appreciate that you’ve gone through something really difficult.” 

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