Читать книгу Miles Apart - Annabel Bower - Страница 12

Over and over again while researching this book, women said to me, I didn’t know how to begin talking about my loss, I felt like I was being overly dramatic or too sensitive, I had to campaign for my baby’s worth and meaning, or I felt like had no right to be grieving at all. All of these comments broke my heart. For some archaic reason, and despite it happening to so many women, baby loss is a taboo subject – an event that is usually shared quietly, privately and often only in detail with those who have also experienced it. The death of a baby in utero is one of the few deaths within our society that is not routinely announced publicly. This may be because it is so traumatic for the bereaved and because we are yet to create a safe space in which to communicate it openly.

Community awareness about stillbirth is minimal and many people misunderstand and undervalue the emotional and physical impact of miscarriage. Funding for research into the cause of both stillbirth and miscarriage is lacking, as they are sadly viewed as inevitable potential outcomes of pregnancy, rather than a medical crisis to be investigated. The ongoing psychological impact the loss of a baby has on mothers and families is immeasurable and we need to help reduce this and stop unnecessary suffering.

As someone who grew up in the 1980s, I have vivid memories of Red Nose Day, in support of SIDS (sudden infant death syndrome). We would take a two-dollar coin to school to buy a red nose to wear for the day. We all knew we were giving money to help scientists and doctors find out why some babies suddenly died in their sleep: this fact wasn’t hidden. We all knew that some little babies went to sleep and never woke up. Sadly, we don’t have open conversations about babies lost in the womb, as we were encouraged to do with SIDS. This needs to change.

I only recently discovered that (as of 2017) for every baby lost to SIDS, thirty-five are lost to stillbirth. That is six babies a day, in Australia alone. The rate of stillbirth, unlike the rate of SIDS, has not dropped significantly in the past twenty years, and in my opinion, the information (and in many cases, the support) offered to women who have had a miscarriage has not evolved adequately either over the last few decades. Many women I have spoken to feel that their loss is minimised and (wrongly) think they’re at fault. The Red Nose Organisation now contributes significant funds and resources to support research into baby loss during pregnancy as well as neonatal death. Red Nose also offers support to anyone who has suffered the unexpected loss of a baby or a child, be it through miscarriage, medical termination, stillbirth or after birth. While in many cases miscarriage cannot be prevented, new research is emerging and gaining momentum. There is also strong evidence that the rate of stillbirth could potentially be reduced by educating women of signs to look out for during pregnancy.

Due to the exceptional work of the Red Nose organisation, the rate of deaths from SIDS has reduced by 85% in the last twenty years. In 2017, 87 babies were lost to SIDS. In this same year, 2107 babies were lost to stillbirth, and an estimated 100,000 plus to miscarriages. According to some statistics, there is one miscarriage every three and a half minutes. That amounts to a lot of heartbroken parents. The death toll in 2017 from motor vehicle accidents was, tragically, 1225. Despite the fact that the rate of stillbirth is almost double that of the road toll, information to help educate parents and reduce the rate of preventable stillbirths is not communicated in a consistent or ongoing way. Conversely, public awareness about road safety is broadcast far and wide in government funded campaigns to help reduce the rate of accidents. We drive cars fitted with multiple safety devices, are legally required to wear seatbelts, adhere to the speed limit and know not to drink and drive. This information is communicated via television commercials, radio and on social media. By comparison, simple practices such as counting kicks and monitoring a baby’s movement, which can in some cases help prevent stillbirth, are not spoken of broadly or even directly between health professionals and expectant mothers. In no way do I wish to pit the impact of one loss against another, but these figures highlight the lack of public awareness and education surrounding stillbirth.

The Adelaide-based charity Still Aware is Australia’s only charity exclusively dedicated to raising awareness of stillbirth. Through education, action and prevention, it aims to see a 20 per cent reduction in preventable stillbirth by 2025 and to lift the level of stillbirth understanding to that of SIDS. This organisation is empowering women to monitor and record their baby’s movements in utero and to take action if any changes occur. Due to the work of this incredible charity and so many more, I hope over time we will change and evolve the dialogue surrounding miscarriage and stillbirth. I am optimistic that the next generation will possess both the awareness and the confidence to speak openly of any worries they have during pregnancy.

In my first pregnancy, I spent so much time thinking about what we would name our baby, and what kind of cot and pram to buy. It seemed so important at the time, but in the greater scheme of things, such preoccupations were inconsequential and pointless. There was no mention that anything could go wrong with the pregnancy. People don’t want to burst your bubble of innocence and happy anticipation. We brush aside and bury deep the ugly reality that not all babies make it, which reinforces the taboo. Sharing is not for everyone, but we do need to give future mothers the tools to cope with what may befall them. Babies are lost and it is crucial that women in the future do not face this heartache without some prior knowledge of what is involved both physically and emotionally. We owe it to them to make sure they do not feel alone and isolated in their grief.

If I’d had a miscarriage before doing research for this book, I would have had no idea what to do. I would probably have called my husband and my doctor, but apart from that, I would have had no idea what lay ahead, what the physical process was, or what would happen to me and my baby. I shudder at the thought that women will continue to fall down this rabbit hole of baby loss completely unaware of what it is like and without the comfort of knowing what their options are. And what I dislike even more is that people will continue to feel that their grief is unworthy and not to be shared, because this topic has such a stigma attached. By sharing our stories, we create a safe environment in which other women feel safe, hopefully giving them the confidence to tell their own stories, knowing that they will be met with understanding and support.

Kristina Keneally, former Premier of New South Wales, tragically gave birth to her stillborn daughter Caroline in 1999. She has campaigned tirelessly since to raise public awareness about stillbirth and was instrumental in coordinating the 2019 ‘Select Senate Inquiry on Stillbirth’, which helped to secure much-needed funding for research, prevention, education and the support of bereaved parents. Kristina has spoken about the stigma and silence surrounding stillbirth: “Remaining silent has meant we don’t talk about it. It’s meant we don’t address it. It’s meant that stillbirth has been a tragedy people have suffered in silence. We viewed it as a private tragedy, not a public health problem. And it is a public health problem.”

Baby loss as a whole seems to finally be coming out of the shadows and I can only hope this helps people talk about it more freely. That is why I tell my story. I hope other people will feel that they, too, can speak out as much or as little as they feel comfortable with. I hope they see that they won’t be dismissed as being overly emotional, self-indulgent, or too absorbed in their grief. Baby loss is a very real loss and it’s time to recognise just how significant it is and how big the ongoing effects are. We need to look after our mothers, give them the care they need, equip them with the information before and the tools after to best cope with the loss of a baby at any stage of pregnancy. It also needs to become routine practice that women are told how and when to monitor their baby’s movements and not to hesitate to report changes. At the end of this book, I have listed several charities that offer counselling services and information about pregnancy loss at various stages. There is incredible support out there and many passionate volunteers who work tirelessly to make sure people do not endure this heartache alone.