FETAL ALCOHOL SPECTRUM DISORDER: NEW ZEALAND BIRTH MOTHERS’ EXPERIENCES

Main Article Content

Jenny Salmon

Keywords

Fetal alcohol spectrum disorder, behaviour, cognition, education, health, judicial system

Abstract

The  aim of this  study  was  to describe  the ‘lived’  experiences  of New Zealand  birth mothers,  from pregnancy onwards, of a child/ren diagnosed with Fetal Alcohol Spectrum Disorder (FASD).


 Method


A qualitative paradigm was utilized so that the participants could tell their stories through words and text rather than collecting statistical data which is the domain of quantitative  research. The adoption of a feminist standpoint theory bridged a communication gap, adjusted the balance of power within society and gave visibility and voice to the women. Eight New Zealand-resident  multipara  biological mothers ages 18 and over, who had nurtured or were still living with their affected offspring, were studied. Their ages ranged from 29 to 64. The mothers were interviewed  in depth, face-to-face,  using unstructured, open-ended questions. Data were analyzed using the constant comparative method.


 Results


The mothers described a range of issues of concern for their disabled offspring and themselves (as advocates) relating to health, social, educational, judicial systems, lack of knowledge by professionals and problems in diagnosis, to being oppressed and stigmatized. Cognitive concerns for the offspring included attention-deficit, absence of fear, diminished memory and comprehension and inability to acknowledge and understand consequences.  Behavioural issues included excessive crying or no crying as a baby, lying, stealing, hyper- activity, aggressiveness, destructiveness,  sexual promiscuity and few friends. Other issues of concern were delayed milestones and numerous health problems. All mothers stated that the pregnancy, labour and delivery of their child with FASD were different from their other non-compromised  pregnancies/labours/deliveries. Most mothers said that the doctors used medical language which they did not understand, thus giving power to the former. Seven mothers were either married to or partners of alcoholics when they conceived their offspring with  FASD.  All mothers  had  been drinking  alcohol  before  becoming  pregnant.  Six mothers  came from drinking families. Most mothers continued  to consume alcohol because they did not know that they had conceived. All mothers were unaware of FASD and its effects on the unborn child. Eight babies had low Apgar scores with an average of 6 (out of 10) and low birth weight (average 6lb 2oz). An Apgar score is a numerical expression of an infant’s condition, usually determined at 60 seconds after birth, based on heart rate, respiratory efforts, muscle tone, reflex irritability and colour. All women were of middle to high socio-economic status. Seven mothers experienced family breakdown as a result of alcohol consumption by the biological father of the child with FASD. All women feared for their child’s future.


 Conclusion


Health, social, educational,  judicial professionals,  policy-makers  and agencies, need to  understand  and be educated in the daily realities and complex problems that children with FASD and their families face. Only then will the correct diagnosis be made so that these individuals can receive the nurturing, needs, education, funding and support they require in order to live full and meaningful lives and have the quality of life they deserve.

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References

1. Leslie M, Robert G. Enhancing Fetal Alcohol Syndrome (FAS)-related Interventions at the Prenatal and Early Childhood Stages in Canada. Canadian Centre on Substance Abuse, Ottawa, Canada 2001.
2. Marks R. Fetal Alcohol Syndrome. A New Zealand Perspective. New Ethicals 1996: Nov. 9-13.
3. Ministry of Health. Alcohol Use in New Zealand: Analysis of the 2004 New Zealand Health Behaviour Survey – Alcohol Use 2007.
4. Minimising Alcohol and other Drug Related Harm. Ministry of Health, New Zealand 2001.
5. Food and Nutrition Guidelines for Healthy Pregnant and Breastfeeding Women: A Background Paper. New Zealand Government- Ministry of Health 2006.
6. Chudley AE, Conry J, Cook JL, Loock C, Rosales T, LeBlanc N. Fetal Alcohol Spectrum Disorder: Canadian Guidelines for Diagnosis. CMAJ 2005; 172 (Suppl 5).
7. Counsell A, Smale P, Geddes D. Alcohol Consumption by New Zealand Women During Pregnancy. The New Zealand Medical Journal 1994; 107(982):278-281.
8. Watson P, McDonald B. Nutrition During Pregnancy. Report to the Ministry of Health. Massey University, Auckland, New Zealand 1999.
9. Mathew S, Kitson K, Watson P. Assessment of Risk of Foetal Alcohol Syndrome and other Alcohol Related Effects in New Zealand: A Survey of Midwives in New Zealand. Institute of Food Nutrition & Human Health, Massey University, Palmerston North, New Zealand 2001.
10. McLeod D, Pullon S, Cookson T, Cornford E. Factors Influencing Alcohol Consumption During Pregnancy and After Giving Birth. The New Zealand Medical Journal 2002;115:1157.
11. Parackal S, Parackal M, Ferguson E, Harraway J. Report on Awareness of the Effects of Alcohol Use During Pregnancy Among New Zealand Women of Childbearing Age. University of Otago, Dunedin, New Zealand 2006.
12. Alcohol Healthwatch. Fetal Alcohol Spectrum Disorder in New Zealand: Activating the Awareness and Intervention Continuum. Newmarket, Auckland 2007.
13. National Alcohol Strategy 2000-2003. Wellington: Alcohol Advisory Council of New Zealand and Ministry of Health.
14. Alcohol Advisory Council of New Zealand Baby or the Bottle? Newsletter of the Alcohol Advisory Council of New Zealand. Te Panei a te Kaunihera Whakatupato Waipiro o Aotearoa: 2001b:2-4. Accessed February 2008 at: http://alcohol.org.nz
15. Alcohol Advisory Council of New Zealand. The Burden of Death, Disease and Disability due to Alcohol in New Zealand. Occasional Publication No. 23, Wellington 2005. Accessed March 2008 at: www.alac.org.nz and www.waipiro.org.nz
16. O’Leary CM. Fetal Alcohol Syndrome: Diagnosis, Epidemiology and Developmental Outcomes. J Paediatr Child Health 2004;40(12): 2-7.
17. Scoop Independent News. No Alcohol During Pregnancy Says ALAC, 2004 Accessed February 2008 at: http://www.scoop.co.nz/stories/GE0509/S000 11.htm
18. Tait CL. A Study of the Service Needs of Pregnant Addicted Women in Manitoba. Winnipeg: Manitoba Health, 2000.
19. Institute of Medicine. Fetal Alcohol Syndrome: Diagnosing, Epidemiology, Prevention and Treatment. Washington, DC: National Academy Press, 1996.
20. Tait CL. Fetal Alcohol Syndrome Among Aboriginal People in Canada: Review and Analysis of the Intergenerational Links to Residential Schools. Ottawa, Ontario: Aboriginal Healing Foundation, 2003.
21. Royal College of Obstetricians and Gynaecologists. Alcohol Consumption in Pregnancy (2001) Accessed in 2005 at: http://www.rcog.org.uk
22. Sood B, Delany-Black V, Covington C, Nordstrom-Klee B, Ager J, Templin T, et al. Prenatal Alcohol Exposure and Childhood Beavhiour at Age 6 to 7 Years: 1 Doseresponse Effect. Pediatrics 2001;108(2):E34.
23. Loock C, Conry J, Cook JL, et al. Identifying Fetal Alcohol Spectrum Disorder in Primary Care. CMAJ 2005; 172(5).
24. Centers for Disease Control & Prevention. Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) – Final Report. Seattle, Washington: Fetal Alcohol & Drug Unit, University of Washington School of Medicine, 1996.
25. Australian Medical Association [media release page on the Internet]. Canberra (AUST): AMA Highlights Dangers of Alcohol During Pregnancy. Media Release, 2005. Available from: http://www.ama.comau/web.nsf/doc/WEEN- 6FSVM4
26. Australian Drug Foundation [drug issues page on the Internet]. Melbourne (AUST): [cited 2005 Nov 26]. ADF Position on Alcohol Health Warning Labels, 1999. Available from: http://www.adf.org.au/article.asp?ContentID= warning_labels
27. Maier SE, West JR. Drinking Patterns and Alcohol-Related Birth Defects. Alcohol Research & Health 2001; 25.
28. Pierce DR, West JR. Blood Alcohol Concentration: A Critical Factor for Producing Fetal Alcohol Effects. Alcohol 1986;3:269- 272.
29. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973;2: 999-1001.
30. Lemoine P, Harrousseau H, Borteyru JP, et al. Les enfants de parents alcholiques. Anomalies observeas. A propos de 127 cas. Quest Medical 1968; 21:476-482.
31. Canadian Paediatric Society. Fetal Alcohol Syndrome. Paediatric Child Health 2002;7(3):161-174.
32. Roberts G, Nanson J. Best Practices. Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy. Health Canada, 2000.
33. Leslie M, Roberts G. Nurturing Change. Working Effectively with High-risk Women and Affected Children to Prevent and Reduce Harms Associated with FASD. Canadian Centre on Substance Abuse, Ottawa, ON, (2004). Accessed March 2008 at: www.ccsa.ca/fas and www.mothercraft.org
34. Clarren SK, Smith D. The Fetal Alcohol Syndrome. N Engl J Med 1978;298:1063- 1067.
35. Hanson JW, Streissguth AP, Smith DW. The Effects of Moderate Alcohol Consumption During Pregnancy on Fetal Growth and Morphogenesis. J. Pediatr 1978;92:457-460.
36. Gardner J. Living with a Child with Fetal Alcohol Syndrome. MCN 2000;25(5):Sept/Oct.
37. Koren G, Nulman I, Chudley AE, et al. Fetal Alcohol Spectrum Disorder. CMAJ 2003;169(11): 1181-1185.
38. Astley SJ, Clarren SK. Diagnosing the Full Spectrum of Fetal Alcohol-Exposed Individuals: Introducing the 4-Digit Diagnostic Code. Alcohol and Alcoholism2000;35(4):400-410.
39. Public Health Agency of Canada. Summary Report National Thematic Workshop on FASD, 2005.
40. Poole N. Evaluation Report to the Sheway Project for High-Risk Pregnant and Parenting Women. Vancouver, BC: British Columbia Centre of Excellence for Women’s Health, 2000.
41. Lupton C, Burd L, Harwood R. Cost of Fetal Alcohol Spectrum Disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 2004;127C(1):42-50
42. Clarren SK. The Western and Northern Canadian Approach to Diagnostic, Intervention and Prevention Research. Plenary Session at the 2 nd International Conference on Fetal Alcohol Spectrum Disorder: Research Policy and Practice Around the World. Interprofessional Continuing Education, University of British Columbia, 2007.
43. May PA, Fiorentino J, Gossage P, et al. Epidemiology of FASD in a Province in Italy: Prevalence and Characteristics of Children in a Random Sample of Schools. Alcoholism: Clinical and Experimental Research 2007;30(9):1562-1575.
44. The Paediatric Society of New Zealand. Oral Submission to the Parliamentary Select Committee Regarding Fetal Alcohol Syndrome/Fetal Alcohol Spectrum Disorder (2004). Accessed 2005 at: www.paediatrics.org.nz/documents
45. Sampson P, Streissguth A, Bookstein F, et al. Incidence of Fetal Alcohol Syndrome and Prevalence of Alcohol-Related Neurodevelopmental Disorder. Teratology; 1997; 56:317-326.
46. Alcohol & Public Health Research Unit, Auckland. Advice for Purchasing Strategy on Public Health Issues: Alcohol Harm Reduction. Runanga, Wananga, Hauora me te Paekaka, PB 92019, Auckland, 1999.
47. Leversha AM, Marks R. Prevalence of Fetal Alcohol Syndrome in New Zealand. The New Zealand Medical Journal 1995;108:502-5.
48. Fetal Alcohol NZ (FANZ). (1999) Accessed in 2005 at: www.everybody.co.nz.
49. Allen K, Riley M, Goldfeld S, et al. Estimating the Prevalence of Fetal Alcohol Syndrome in Victoria Using Routinely Collected Administrative Data. Australia and New Zealand Journal of Public Health 2007; 31(1):62-66.
50. New Zealand Paediatric Surveillance Unit Fetal Alcohol Syndrome (FAS). (2004) Accessed in 2005 at: http://webnz.co.nz:8001/paediatrics/nzpsu/FA S%20protocol.htm
51. Bower C, Silva D, Henderson TR, et al. Ascertainment of Birth Defects: the Effect on Completeness of Adding a New Source of Data. J Paediatr Child Health 2000;36(6):5746.
52. Hoffman JD, Shanske A. Trends In Fetal Alcohol Syndrome. International Pediatrics 2003;18(2):114-118.
53. Symes M. The Legacy of Prenatal Exposure to Alcohol: Fetal Alcohol Spectrum Disorder: The New Zealand Situation. Doctoral Thesis. Medical Anthropology, Massey University, Albany, New Zealand, 2004.
54. Salmon JV. FAS: New Zealand BirthMothers’ Experiences. Wellington, Dunmore Pubs, 2007.
55. Mansfield M. Accommodating the Fetal Alcohol Spectrum Disorders in the Diagnostic and Statistical Manual of Mental Disorders (DSM V). J FAS Int 2006:e23.
56. Kernes KA, Don A, Mateer CA, et al. Cognitive Deficits In Nonretarded Adults With Fetal Alcohol Syndrome. Journal of Learning Disabilities 1997;30(6):685-693.
57. LaDue RA. Psychosocial Needs Associated with Fetal Alcohol Syndrome: Practical Guidelines for Parents and Caretakers. Seattle, WA: University of Washington, 1993.
58. Streissguth AP, Barr HM, Martin DC. Maternal Alcohol Use and Neonatal Habituation Assessed with the Brazelton Scale. Child Dev 1983;54: 1109-18.
59. Streissguth AP, Bookstein HM, Barr HM, et al. A Fetal Alcohol Behaviour Scale. Alcohol Clin & Exp Res 1998;22(2):325-33.
60. Streissguth AP, Kanter J. The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle: University of Washington Press, 2002.
61. Mattson S, Riley E, Gramling L, et al. Heavy Prenatal Alcohol Exposure With or Without Physical Features of Fetal Alcohol Syndrome Leads to IQ deficits. Journal of Pediatrics 1997; 131:718-721.
62. Streissguth AP. Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Paul H. Brookes Pub. Co., 1997.
63. National Center on Birth Defects & Developmental Disabilities, Centers for Disease Control & Prevention, Department of Health & Human Services. Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis. Department of Health and Human Services, 2004.
64. O’Malley KD, Nanson J. Clinical Implications of a Link Between Fetal Alcohol Spectrum Disorder And Attention-deficit Hyperactivity Disorder. Canadian J Psychiatry 2002;47(4):349-353.
65. LaDue RA, Streissguth AP, Randels SP. Clinical Considerations Pertaining to Adolescents and Adults with Fetal Alcohol Syndrome. In T.B. Sonderegger (Ed.). Perinatal Substance Abuse: Research Findings and Clinical Implications. Baltimore: The Johns Hopkins University Press, 1992:104131.
66. Williams SJ. Is There Justice in the Juvenile Justice System? Examining the Role of Fetal Alcohol Spectrum Disorders. Justice Policy Journal 2006;3(1).
67. McCreight B. Recognizing and Managing Children with Fetal Alcohol Syndrome/Fetal Alcohol Effects: A Guidebook. Washington, DC: CWLA Press, 1997.
68. Strauss A, Corbin J. Grounded Theory Methodology: An Overview. In Handbook of Qualitative Research by Denzin, N.K. & Lincoln, Y.S. (Eds). Newbury Park, CA: Sage Pubs Ltd, 1994.
69. Ritchie B. Fetal Alcohol Spectrum Disorders (FASD) Exposure Rates. Primary and Cascade Results of In Utero Alcohol Exposure and Incidence Markers. FASlink Fetal Alcohol Disorders Society. (2007). Accessed in March 2008 at: www.faslink.org
70. Mattson SN, Goodman AM, Caine C, et al. Executive Functioning in Children with Heavy Prenatal Alcohol Exposure. Alcoholism, Clinical and Experimental Research 1999;23(11):1808-1815.
71. Ballard K. Concluding Thoughts. In K. Ballard (Ed.) Inclusive Education: International Voices on Disability and Justice. London: Falmer Press, 1999.
72. Rutman D, Callahan M, Lundquist A, et al. Substance Use and Pregnancy: Conceiving Women in the Policy Process. Ottawa: Status of Women Canada, 2000.
73. Mahowald MB. On Treatment of Myopia: Feminist Standpoint Theory and Bioethics. Feminism and Bioethics: Beyond Reproduction. Wolf, S.M. (Ed.). New York: Oxford University Press 1996.
74. Landsman G. Mothers and Models of Disability. Journal of Medical Humanities 2005; 26 Nos.2/3:121-139.
75. Wright JM. Fetal Alcohol Syndrome: The Social Work Connection. Health & Social Work 1981;6(1):5-10.
76. Shelton M, Cook M. Fetal Alcohol Syndrome: Facts and Prevention. Preventing School Failure 1993;37(3):44-46.
77. Clarke M, Toug SC, Hicks M, et al. Approaches of Canadian Providers to the Diagnosis of Fetal Alcohol Spectrum Disorders. J FAS Int 2005;3:e2 – Jan.
78. Read J. Disability, the Family and Society: Listening to Mothers. Berkshire, UK: Open University Press, 2003.
79. Beresford B. Resources and Strategies: How Parents Cope with the Care of a Disabled Child. Journal of Child Psychology and Psychiatry 1994; 35:171-209.