A million little pieces: Parental and physician perspectives on trisomy 18

Abstract. Our lives are full of hopes and expectations; but are these hopes and expectations always understood by those whopractice in the healthcare system? What happens when communication breaks down? From my own experience I can tell youthat it leads to a lonely journey, a journey that, for the most part, left me feeling abandoned and desperately unhappy. Havingkept a journal throughout my pregnancy I was challenged by a neonatologist, Andrew Watkins, to write about the experienceand discuss hope, communication, costs and bioethics. The challenge arose after he heard of my journey, particularly as the storyresonated 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 chosenot to terminate my son diagnosed with a ‘lethal’ abnormality. 

*Corresponding Author: 

Ms. Pauline Thiele, RN, 126 Barkers Road, Main Ridge, 3928 Victoria, Australia. Tel.: +61 3 59896420; E-mail: liam194@gmail.com.


Dr. David A. Munson, Newborn/Infant Intensive Care Unit and Perinatal Palliative Care Initiative, Center for Fetal Diagnosis and Treatment, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, PA 19104, USA. E-mail: munson@email.chop.edu