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Article type: Research Article
Authors: Thiele, P.
Affiliations: Honors student, Monash University, Frankston, Victoria, Australia
Note: [] Corresponding author: Ms. Pauline Thiele, Honors student, RN, 126 Barkers Road, Main Ridge, 3928 Victoria, Australia. Tel.: +61 3 59896420; E-mail: liam194@gmail.com
Abstract: Our lives are full of hopes and expectations; but are these hopes and expectations always understood by those who practice in the healthcare system? What happens when communication breaks down? From my own experience I can tell you that it leads to a lonely journey, a journey that, for the most part, left me feeling abandoned and desperately unhappy. Having kept a journal throughout my pregnancy I was challenged by a neonatologist, Andrew Watkins, to write about the experience and discuss hope, communication, costs and bioethics. The challenge arose after he heard of my journey, particularly as the story resonated strongly with him. Although all topics are relevant, I would need to write a PhD to give full justice to all headings but, albeit briefly, I have included all areas. It is my invitation to you to experience a little of my journey; a journey where I chose not to terminate my son diagnosed with a ‘lethal’ abnormality.
Keywords: Fetal abnormality, hope, communication, cost, trisomy 18, narrative, Edwards syndrome
DOI: 10.3233/NPM-2012-54611
Journal: Journal of Neonatal-Perinatal Medicine, vol. 5, no. 1, pp. 1-7, 2012
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