I conceived my first child at 30. I had been married for 4 years when I ceased my long-term use of the birth control pill. I continued to drink alcohol at weekends, socially, but knew about avoiding certain foods and to reduce my caffeine intake. I am well educated and had done my research. I didn’t want to completely change my lifestyle, as long as my approach was ‘safe’ for my developing baby.
My pregnancy was confirmed at 6.5 weeks. We conceived our son on the first occasion of unprotected intercourse; we were incredibly lucky and it was a big surprise!
My son was born as a chubby cherub at full term. He was physically perfect in every way. Many sleepless nights followed as we struggled to settle him. He cried a lot and he only slept for short periods. Breast feeding wasn’t an option despite weeks of trying and he had numerous ear infections over the first few years of his life.
I came to know the child health nurses well over the first 12 months. They were supportive and caring. My son was thriving and meeting his developmental milestones, even if a little late. He had good eye contact, could hear and see well, responded as he was expected to for his age and he was a happy baby after the first 5 months of being unsettled … but I knew something wasn’t right. As a first-time mum, I decided my feelings must be my lack of experience raising children.
My son was a friendly and very active toddler but would often act quite differently in group settings or noisier places, and after many, many challenging situations, I tried to minimise these exposures if I could.
From kindergarten to year 2, the teacher feedback would be related to his inattention and grasp of some of the language basics. We had moved locations a couple of times during my son’s early school years and the gaps in his education were assumed to be due to this. Despite visits to allied health professionals across the years and then a developmental paediatrician when he was 6, the assessments never raised any concerns, other than comments of ‘he’s a late developer’, ‘he’ll grow out of it’, ‘he’s a boy, they mature slower!’ Those feelings of being ‘that’ over-anxious helicopter parent were there again
From the age of 6 until 11, he remained at the same primary school. The school helped by engaging him in literacy, numeracy and resilience programs and he had an Individual Education Plan to support him. However, at the start of year 6, we received his year 5 end-of-school test results – they were significantly low. He could no longer mask his work avoidance strategies with his charm; he needed to demonstrate more independent learning and he wasn’t able … his behaviour started to become challenging in the classroom.
Just before my son turned 12, I learnt for the first time that there is no minimum threshold for alcohol consumption to determine prenatal alcohol exposure (PAE) during pregnancy. I realised there was a risk my social drinking before my pregnancy was confirmed, could have caused a potential brain injury. I didn’t know alcohol was a teratogen, a poison and could cause harm to my growing baby.
I sought answers from GPs, clinical psychologists, an occupational therapist, speech pathologist and developmental paediatrician. I disclosed my alcohol consumption prior to my pregnancy confirmation. I could identify this to the night of conception and only two further occasions of binge drinking (4 to 6 units of alcohol). I knew this because I remembered telling the GP when my pregnancy was confirmed – he had told me not to worry. Each of the experts told me it was highly unlikely my son had incurred a brain injury through prenatal alcohol exposure due to the few occasions this occurred.
Despite the wealth of expertise I had consulted, I did further research into PAE and how this could result in Fetal Alcohol Spectrum Disorder, FASD. I learnt that 50% of pregnancies are unplanned and 60% are alcohol exposed in Australia! I read that only 17% of children with FASD have the characteristic facial features, the complete opposite of what I believed. I contacted the NOFASD helpline, gathered more information, did more research and then contacted a FASD informed paediatrician for assessment.
A year has passed and my son now has several diagnoses, which include FASD. I have heard many comments made about diagnosis. I’ve been asked why I would want to ‘put a label’ on my son, particularly because FASD is such a stigmatising disability for the mother and the child. There are many similarities between FASD and other common disorders and disabilities. If a medical- or allied health professional is not FASD informed, there is a strong likelihood this will be missed or misdiagnosed.
Receiving a diagnosis was incredibly hard. I will always live with the guilt. However, it has been the BEST thing we could have done for my son. He already had far more negative labels attached to his name in the education system; assumptions were made about his attitude, application and behaviour. We can now support his learning and development with the correct strategies and advocate for him with the knowledge of detailed assessment reports.
The Australian Medical Association believes the prevalence of FASD in Australia to be between 2 and 5% of the population. This could mean more than 15,000 babies being born each year with FASD and that FASD is 2.5 times more prevalent than Autism Spectrum Disorder in Australia!
Our family is very lucky. Our son is a relatively happy, healthy and stable young man, and we are fortunate that we are able to provide him with strong boundaries, consistency, routine, good nutrition and a life without trauma. Our son astounds us EVERY DAY … his resilience, strength of character, determination and perseverance are truly amazing.
I am a birth mother of a child with FASD. I will carry the guilt of unknowingly harming my handsome teenager for the rest of my life. He has a lifelong disability and will need our support for the entirety of his life. However, I will not hide the reasons for my son’s challenges with the people who directly support him. I will advocate for my son, for a woman’s right to information about the potential harms of alcohol to a developing fetus, to help reduce stigma of FASD and to raise awareness amongst the general Australian population to help reduce the occurrence of the most prevalent and preventable disability in the world!
This story was told to the NOFASD Australia Helpline Manager. If you, or anyone you know, is or may become pregnant, drinking NO ALCOHOL is safest. View the NHMRC Australian guidelines to reduce health risks from drinking alcohol here.
If you would like to discuss alcohol and pregnancy, the NOFASD Helpline is available 7 days per week 1800 860 613 or you can visit the NOFASD website
On Wednesday 9th September as part of International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day, the Morrison Government committed nearly $24 million of funding for FASD Diagnostic and Support Services.