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Not Compatible With Life - An Extract from A Diary of Keeping Daniel - Page 3


Kylie Sheffield

When I agreed to a routine scan I was concerned only with ensuring that my baby was as fit as any other to be delivered at home. I don't know that I had ever heard the procedure referred to as a 'foetal anomaly scan', pondered the fact that its primary purpose was to screen for and detect specific abnormalities that may indicate the presence of serious congenital defects, or considered that it was timed specifically to allow parents the option of terminating before the twenty-fourth week of the pregnancy.

In hindsight, it seems unbelievable that I could have been so naive, but the results of recent research confirm that I was not alone. In a study of women attending public antenatal clinics at the Royal Women's Hospital between January 2003 and December 2004, researchers conclude that many Australian women participating in prenatal genetic screening are not well-informed, particularly regarding the potential need for follow-up diagnostic testing and the risks that come with it (Rowe, Fisher and Quinlivan 2006; Wallace 2006).

A separate study of women attending specialist ultrasound practices for first-trimester screening for Down syndrome returned similar findings - of the 163 women who participated, only 68% were assessed to have made an informed choice (Jaques, Sheffield and Halliday 2005). Thissuggests that even in private clinical care, Australasian Guidelines on prenatal screening - which state that all women undergoing testing should be provided with written and oral explanations, and that proper understanding of the tests should be ensured are not being met.

On the day of my own scan, I was filled only with a sense of eager anticipation and completely clueless as to how ill-prepared I was to deal with any negative prognosis. When, after an hour of prodding and probing, the sonographer's words came at me like bullets, the only ones that really hit home were 'not compatible with life'. Even after the consulting obstetrician's explanation, though thorough and sensitively delivered, I found myself unable to grasp the facts. I had felt this baby moving inside me for a number of weeks now and had just observed his antics on screen for more than an hour as he kicked and squirmed and sucked his thumb. Surely it wasn't possible for him to be anything but healthy

Disbelief and denial, I'm told, are common reactions among expectant parents whose scans reveal serious problems. This is hardly surprising when so few of those who submit to foetal anomaly scanning are aware of the common markers and their significance, or prepared to receive anything but good news.

The night I spent alone after Daniel's markers were first detected was the most anxious of my life. And while nothing could have prepared me for the shock of discovering my baby's life may be at risk, I could certainly have pre-armed myself with a more thorough knowledge of ultrasound and the diagnostic procedures I may subsequently be offered. At least then I might have spared myself the bewilderment that accompanied my grief. As it was, I felt I had been blindsided.


References


Buckley, SJ 2005,? http://www.humanlife.net/view_reports.htm?rpid=23

Rowe, HJ, Fisher JRW & Quinlivan, JA 2006, 'Are pregnant Australian women well?informed about prenatal genetic screening A systematic investigation using Multidimensional Measure of Informed Choice', Australian and New Zealand Journal of Obstetrics and Gynaecology, 46: 433-439, Blackwell Publishing, Australian and New Zealand Journal of Obstetrics and Gynaecology, 46: 370-371, Blackwell Publishing



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