What I’ve Learned About Baby Loss in New Zealand
- Molly Gleydura
- Oct 14, 2022
- 12 min read
Baby Loss Awareness Week 2022
What is Baby Loss Awareness Week
Today, in New Zealand, (Oct. 15) marks the end of Baby Loss Awareness week. This is a week of remembrance and acknowledgement recognized globally from October 9th through 15th annually. This week culminates with a wave of light that goes around the globe, with candles being lit at 7pm local time to honor all of the babies that have died. New Zealand helps to begin this wave of light, which ends about a full 24 hours later.
Some Terms Defined
Miscarriage
In New Zealand and the US, miscarriage is categorized as the loss of a pregnancy in the first 20 weeks gestation. There is no data on the prevalence of miscarriage in New Zealand annually. But, approximately 10-20% of known pregnancies end in miscarriage.*
New Zealand does not recognize losses before 20 weeks gestation with a certificate of life or death. These births occur on the gynecological ward rather than on a birthing unit.
Stillbirth
Stillbirth is defined as losing a baby after 20 weeks of pregnancy. In 2018 in New Zealand, there was a fetal death rate of 7.0 per 1000 total births, which characterizes stillbirths. That is the equivalent of 414 fetal deaths registered in that year. About 1 in every 200 pregnancies ends in a stillbirth.*
Sudden Infant Death Syndrome (SIDS)
This is the sudden and unexplained death of a baby younger than 1 year old. It is most commonly associated with sleep, and it is sometimes referred to as “cot death”. In New Zealand, in 2018, there was an infant death rate of 4.3 per 1000 live births, which equates to 255 infant deaths registered that year.
*Not a NZ-specific piece of data.
Who I’ve Worked with in New Zealand
Through my project, I’ve been able to learn so much more about baby loss and the emotional, psychological, and practical challenges that come along with experiencing this type of loss and grief. Along with that, I have been inspired by a fantastic group of individuals in New Zealand whose own experiences with baby loss have motivated them to create communities for support, resources, and remembrance. I am so lucky to have been able to connect with Baby Loss NZ, Huggable Hearts, Angel Casts, Miscarriage Matters NZ, and Sands Canterbury. If you have time, please check out their websites and facebook pages to learn more about the incredible work that they are doing!
What I have Learned
Stigma Around Miscarriage and Stillbirth
In speaking with these charities and the families that they serve, it became clear to me quite early on that there still exists quite a stigma around discussing stillbirth and miscarriage in New Zealand, like in the United States. Many of the mothers shared with me and between themselves that they didn’t learn about the similar experiences of close friends, relatives, or other communities members until they mentioned their own loss. Even then, there was a lot of reluctance from most people to broach the topic, worried about the reaction that they may receive from their conversation partner. Having a miscarriage or a stillbirth seems to be regarded as a less acknowledged loss, one that is not openly discussed, and one that should be dealt with in private, quickly, and quietly.
It was simultaneously surprising and expected to hear all the stories of the many women who discovered that their mother, grandmother, sister, aunt, neighbor, or friend had a miscarriage or stillbirth previously, but only after sharing their own experience. One woman told me that a good family friend and neighbor of hers growing up, viewed much like an aunt in her life, had a full-term stillbirth with her daughter. She learned this 20-some years later, a few weeks after returning home from the hospital without her own daughter, born sleeping just a few weeks prior to her due date.
The standard practice of waiting 12 weeks to announce one’s pregnancy also contributes to this trend. While waiting to share the news of a pregnancy protects an individual from having to publicly share about a loss if it is experienced, it also prevents a lot of support from being offered during a miscarriage, since the community is unaware.
Since it is commonplace to wait to share about a pregnancy and it is considered socially taboo to discuss miscarriage and stillbirth, it is challenging for women to find support and community when grieving the death of their baby. Some families told me that it can be difficult to determine when and where it is appropriate to discuss their grief and loss, too, as in some situations, others have made them feel ashamed at even the mention of miscarriage or stillbirth in conversation.
Unfortunately, this all works in a vicious cycle, with the shame and stigma hushing discussions about miscarriage and stillbirth, which serves to just breed more shame and stigma around the topic. The power of the organizations that I worked with during my time in New Zealand is that they are providing a safe space for families to gather, find support, remember their babies, and share their experiences with others.
Lack of Adequate Professional Training
A common theme shared with me from the families I met with who had experienced baby loss was that, in general, there seems to be a real deficit in medical professional training around baby loss and providing care to the families before, during, and after. Relatedly, there aren’t structures in place within the medical system to support these families and care for them and their babies in a manner that felt appropriate and thoughtful.
To illustrate this, I have a few stories to share, with some details changed to maintain anonymity.
One of the big differences in maternity care in NZ and in the US is the prevalence of midwifery care. During my time here, I met one mother who told me about her experience having a stillbirth, nearly 20 years ago. She said that when the midwife arrived to her home to do a follow-up visit after the birth, she chatted with the couple for a bit before asking, “Where’s baby? Are they sleeping?” This experience and the lack of preparation and systems for the midwives in handling patients who have experienced loss caused the care team to begin putting stickers on patient files to indicate to midwives if the baby has died. This way, a family and midwife would, hopefully, not be put in the same uncomfortable and insensitive position.
Despite that one positive change, not all areas that women interact with during their prenatal care have developed systems to prevent these sorts of errors. Another couple shared with me that when getting HCG levels draw to confirm a miscarriage, the individual taking the labs congratulated them on their pregnancy. When trying to advocate for changes, such as a simple check box to indicate “suspected miscarriage,” they faced a lot of defensiveness, unnecessary red tape, and rude interactions. With a lot of perseverance, though, they were able to get acknowledgement for the unfortunate encounter and get the marker added to HCG labs to indicate if it is for a miscarriage.
Several of the charities that I connected with during my time in New Zealand create care packs to give to hospitals and midwives to hand out to families who have miscarriages or stillbirths. In New Zealand, if you are having a miscarriage, you are treated on the gynecological ward. I heard from one of the organizations that they had to do a fair amount of education with the nurses on the gynecological ward that they worked with to ensure that everyone experiencing a miscarriage there would receive a pack. One nurse, reportedly, raised her hand and said that she had one woman in the ward who she had treated for a miscarriage six separate times and that she did not need another one. The organizer had to explain that these comfort packs are for the family to choose if they want or not and it is not up to the nurses, or anyone else, to make that determination for them.
Over the years, though, I learned that the medical system is becoming better about being proactive in caring for stillbirths and miscarriages. In Canterbury, one of the directors does a yearly training with young doctors and new nurses on miscarriage and stillbirth and provides information and how to be a support for the families in those moments. She told me that one of the most powerful things that she tells these healthcare professionals is that the family might not remember your name, but they will remember what you said to them.
Language Matters
I don’t think that anyone will debate me on this, but language and how we use it is important. It is interesting to notice the differences, both subtle and obvious, in language usage between two English-speaking countries, like the United States and New Zealand.
Language and its meaning is shaped by the people using it and from where it is originating. It is inherently and utterly an expression of culture. So, it should not be surprising that this extends to the language that is used around death, dying, and grief, as well as language that feels comforting. Or, maybe, more importantly, language that doesn’t.
Despite being cultural, these sentiments are also highly dictated by the individual - what feels right to one can feel completely wrong to their neighbor and vice versa. With that said, though, I have noticed some themes in the language that is used here to describe experiences with death and grief and what language is used when offering support.
In my interactions with the charities that I mentioned above and the families that they serve, I noticed that many tended to prefer the term “baby loss” over using “miscarriage” or “stillbirth” for antenatal deaths.
Above, I use “miscarriage” for the sake of clarity and understanding across cultures and country boarders. However, many of the women I spoke to here in New Zealand who lost a baby before 20 weeks gestation, actually strongly disliked that term. There was a variety of reasons provided to me to explain this aversion. Some didn’t like the stigma attached to the term. Others felt like it diminishes their pain and grief; it minimizes their connection to and love for the baby they lost. Several indicated that the term itself seemed to carry weight that implied fault or blame on their part.
There was a lot of variance around what terms were preferred for describing the death, as well. Some felt it really necessary and important to deal in the concrete and practical reality through saying that their baby died. Other’s used terms that aligned more with their spiritual beliefs or gave them more comfort by saying that their baby “passed away,” “passed on,” “was born sleeping.” Some families I spoke with hated when other said that they had “lost their baby,” while several found it less confronting.
I will speak more about language later on in the section about advice on how to support community members. However, before I move on to the next topic, I did just want to share two brief stories from two very different experiences with surprising parallels and differences. While I was working with Baby Loss NZ in Auckland, I had the special privilege of accompanying Sarah Numan (the General Manager & Principal Caster at BLNZ) to do memory making and castings for a little baby who was stillborn. During our time spent with the young boy, I was struck by how nurturing, caring, and comforting Sarah was - showering him with love, affection, and praises. She commented on his gorgeous full head of hair, his button nose, and chunky baby feet. As I observed all of this, I asked about her experiences doing memory making and castings with the baby’s family present and how they react to observing this. Sarah shared that, for many, it acts as an invitation to them to take notice of these details on their baby, engage in the same types of caregiving and affection, and provides comfort to them. In her response, she told me about a family and baby that she met. During the course of the interaction, Sarah pointed out some of the baby’s precious features that stood out. At some point this prompted the parents to turn to each other and say remark that their baby was perfect.
In another conversation, I spoke with a mother who suffered a stillbirth. In the hospital, the pediatrician came in to do some necessary tasks looking after the baby. While holding him, she turned to the mother and said that the baby was perfect. The mother told me that she had to bite her tongue and stop herself from retorting with, “He’s not perfect, he’s dead!”
I think that these two stories show the power of language, the impact that it can have, and how these impacts vary so widely person to person.
“How many kids do you have?”
This question sparks a mental dilemma for many bereaved parents. Many struggle with an internal debate over whether they should dive into a conversation about their loss or just mention their living children, which can feel like they aren’t honoring the child who died. Then, if they do decide to say, for example, “I have five children, but one died as an infant,” the reactions can feel unsupportive and make them wish they chose the other option. So, if someone does share this type of information with you, be open to it and respond accordingly. Acknowledge what they shared and carry on with the conversation how it feels appropriate. That is not asking how the child died, though. It may, however, be asking what the child’s name is or what they were like. It may not be the time or place for that conversation, either, though. Sometimes your body language is even more important than what you say aloud, too.
Importance of Ceremony and Ritual
Acknowledging the loss is important. One way that to do this is through ceremonies and rituals - whether they are daily, monthly, annually, on special dates, or some other timetable that makes sense and feels right to the bereaved. A really poignant and meaningful bit of advice that I was told by an individual’s whose baby died and now does work with bereaved parent is that these ceremonies and rituals don’t have to be perfect, consistent, or always the same. She mentioned that these ceremonies and rituals can feel like a lot of pressure on parents and that if they feel they are doing them “wrong” they may feel like a “bad parent to a child who isn’t even alive.”
She advises that these ceremonies and rituals can be done at one’s own pace, at their own time, and can change based on what feels right to them at the moment. The rituals can change year to year or they can stay the exact same, and both are valuable, valid, and meaningful.
Many of the organizations I spent time with during my time in New Zealand help families create and participate in some rituals and ceremonies, too. Baby Loss NZ and Huggable Hearts, for example, both provide tangible memories for the babies for families to have as a form of a memorial. Others hold events annually to gather together. Baby Loss does bubble walks to remember and other events throughout baby loss awareness week. Unfortunately, I was unable to attend any of their events, but I was able to join in on a few held in Christchurch before my departure.
On the first day of baby loss awareness week, on Sunday, October 9th, I attended two events. The first was the 3rd Annual Butterfly Fun Run held by Miscarriage Matters NZ. It was a beautiful gathering, full of individuals and families dressed in butterfly costumes, and raising awareness about miscarriage while not feeling shame to speak about it directly and by name.
Later that afternoon, I went to the botanical gardens to join the Sands Canterbury group in honoring their babies who had died. This event was more casual and allowed for drop-ins. This made it such that families could pass by and decided if they’d like to stop and participate and also those not originally part of the ceremony might stop and share in the moment of silence and honor the babies who died. This structure made it such that families could integrate the ceremony into their own memorial activities how they wished, without too much of required of them for this particular event if that felt burdensome to them. The ceremony itself began with a short poem reading, followed by families tossing flowers into the Avon River and children in attendance blew bubbles.
Finding Support
Overall, one main sentiments that I heard repeatedly is that it is really important to find support somehow and from somewhere. The organizations that I worked with provide this support in a handful of different ways. Some offer tangible memories and keepsakes for families to have and hold in order to remember their baby. Others offer emotional and peer support. Some do advocacy and activism. While some do a mix of all of the above and more.
Advice for others on how to support community members who experience baby loss
To make this more easily digestible, I have decided to put this advice simply into a bullet point. Like I said earlier, this advice isn’t going to work for everyone, but seemed to be the common themes that came up when I asked bereaved parents in how they wished their community would and would have supported them.
Acknowledge the loss.
Show up and offer support, even if it isn’t perfect, it is better than nothing.
Ask the bereaved family what they need the most.
Others, though, said they hate that question (^) and prefer to have community members make them offers. Money can be a helpful form of support, too. I have some examples of what offers of support might look like below.
“I’m going to the grocery store, can I pick up anything for you?”
“Is 3pm tomorrow an okay time for me to come over and mow your lawn?”
“Would you like a night out or a night in? I can come and spend time with you or take your kids for the evening if you’d like.”
Say the baby’s name.
Provide support ongoing - send a card, message, or additional support around holidays, significant dates, and as the years go on.
It is ok to say that you don’t know what to say. It is better than relying on potentially hurtful platitudes like, “Everything happens for a reason,” or “They are in a better place.”
Use the terms that the individual and family prefer.
Don’t expect the grief to disappear or for the family to “get over it.” Have compassion and understanding, without an end-date.
Recognize that not everyone is going to respond in the same manner. Grief shows up in a variety of ways between people and it can change how it manifests within one person, too.
If you have any more information, advice, or a story you’d like to share with me in honor of baby loss week or with regard to miscarriage, stillbirth, and baby loss, please feel free to get in contact with me by emailing me at molly.gleydura@oberlin.edu.
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