Loss before life begins: the invisible babies and their invisible deaths
My experience of baby loss was an isolated learning experience and the main objective of my research was to help better resource other women who may find themselves lost in the system caring for women when their babies die. Particularly, I wanted to highlight and possibly remedy the invisibility of women and their babies that die between 12 and 20 weeks gestation. Loss Before Life Begins was written as four journalistic articles with one of the goals to be that all or some of the articles achieve publication in a mainstream New Zealand magazine. I focussed all the research on the last 20 years, beginning in 1985. Firstly, because it coincides with the establishment of Miscarriage Support Auckland, the first group of its kind in New Zealand. Secondly, because it ensured that the participants' stories would be relevant in the current context of how baby loss is treated by society, the media and the health system. Each article had a specific purpose and aim. Firstly, The Language of Loss investigated the background of our popular understanding of baby loss, including the legal categorisations of baby loss in different gestational periods. It also included research into the language commonly used by health professionals working with women whose babies have died. Quotes from the five women who were participants in the thesis were interwoven in the article. Their stories illustrated the effects of insensitive language on a woman's experience, and the perception of care and treatment received by health professionals. Then I reviewed all mainstream media articles published in New Zealand from 1985. This disclosed the lack of articles about baby loss, and the general dearth of practical information provided when stories did appear. Secondly, And Mother Makes Me was the narrative of the five women's stories interviewed about their babies' deaths between 12 and 20 weeks gestation. I discovered that this timeframe is 'invisible' because women under 20 weeks are not part of the obstetric system, and are cared for by nurses instead of midwives. These mothers are invisible, as are their babies' deaths. Article three, The 'System' and the People Working In It encompasses the sometimes conflicting views of four leading health professionals. Possible explanations for why women whose babies die under 20 weeks are treated differently to women whose babies are considered stillborn were included. Conflicting views about the importance of the media's role emerged. Small changes in the use of medical language by health professionals were outlined. Finally, possible reasons for society's difficulty with the concept of death, and specifically the difficulties when a woman's baby dies before its life has begun were uncovered. The fourth and final article, The Way It Is and The Way It Could Be summarised the background reading; media analysis from the last 20 years; the themes from the five women's stories; and the array of health professionals' views. Included are a number of specific meaningful ways that health professionals, media outlets and society can better support the invisible women when their babies die. These include updating medical language printed in brochures; including fact boxes in editorials; giving women and their families an opportunity to talk about their losses; and reviewing 'the system' that allows women who lose babies between 12 and 20 weeks to be cared for by nurses instead of midwives.