This a the brief power point presentation that I used for my presentation for the Capers Conference at Brisbane on May 5th 2011. This was aimed at professionals working with women. For more information or questions visit the website at www.prenatal.stephanieazri.com

1. Prenatal Diagnosis The myths Versus the Facts: Top 5 myths How to support women receiving poor of fatal diagnoses Stephanie Azri Clinical Social Worker Dip Ed, BHSV, BSW, MHSt, PhD Student www.prenatal.stephanieazri.com

2. Background A prenatal diagnosis occurs as the result of prenatal screening during a pregnancy. The goal of this process is to detect genetic and congenital anomalies. Between 2 to 4 % of women in Australia will receive a prenatal diagnosis that requires them to make a decision about a potential termination. Need of women are informational, educational and supportive.

3. Myth one: Use only the technical medical terms with women when discussing the diagnosis Case studies show that women may not understand the medical jargon used, yet may not feel able to interrupt their doctor/specialist to ask for clarification. Medical terms may appear cold and confronting.

4. “He gave me a 1:14 chance of having a Trisomy 13 baby. He also said that my baby had a cystic hygroma and also had exompholece. I didn’t even think to ask what Trisomy 13 is” Lisa’s story- Extract of “High Risk Pregnancy and Fetal Diagnosis; your journey”. S.Azri, 2006. Free Association books, UK.

5. Myth two: Give women all the information as soon as they receive the diagnosis. Case studies show that women who are in shock from receiving a prenatal diagnosis do not retain information shared. Women’s cognitive functions may be temporarily slowed down due to the shock and trauma of the diagnosis.

6. “The doctor was really sorry and announced that my baby had some kidney disease and would die at birth, if she even survived until then. Then, I don’t really remember what happened.” Talina’s story- Extract of “High Risk Pregnancy and Fetal Diagnosis; your journey”. S.Azri, 2006. Free Association books, UK.

9. Myth four: It is easier to terminate a pregnancy with a poor prognosis. Women decide to terminate or carry to term based on various reasons: Gestational age at diagnosis Age and educational level of parents Diagnosis Prognosis Number of other children Religion and values of family

11. “I was having such a hard time deciding what to do. I knew in my mind that there was nothing that modern medicine could do to save her, but I felt like such a horrible mother if I didn’t at least try. How could I not try?”

14. “Our obstetrician was warm and caring. She never judged us and gave us all our options, explaining that both would have different consequences. Although we decided to terminate, she supported us in creating memories of our baby.”2011 testimonies of parents of Prenatal Diagnosis Support (PDS) Australia www.prenatal.stephanieazri.com

16. Abramsky, L., & Chapple, J. (1994). Prenatal diagnosis : the human side (1st ed.). London ; Melbourne: Chapman & Hall.

17. Azri, S. (2006). High-risk pregnancy and foetal diagnosis your journey. London, UK: Free Association Books.

18. Fonda Allen, J. S., & Mulhauser, L. C. (1995). Genetic counseling after abnormal prenatal diagnosis: Facilitating coping in families who continue their pregnancies. Journal of Genetic Counseling, 4(4), 251-265.

19. Howard, E. D. (2006). Family-centered care in the context of fetal abnormality. The Journal Of Perinatal & Neonatal Nursing, 20(3), 237-242.

20. Hutti, M. H. (2005). Social and Professional Support Needs of Families After Perinatal Loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 34(5), 630-638.

21. Leithner, K., Assem-Hilger, E., Fischer-Kern, M., Löffler-Stastka, H., Thien, R., & Ponocny-Seliger, E. (2006). Prenatal care: the patient's perspective. A qualitative study. Prenatal Diagnosis, 26(10), 931-937.

22. Redlinger-Grosse, K., Bernhardt, B. A., Berg, K., Muenke, M., & Biesecker, B. B. (2002). The decision to continue: The experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. American Journal of Medical Genetics, 112(4), 369-378.