Fetal Alcohol Spectrum Disorder (FASD) Awareness Day takes place every year on 9th September and this year it comes in the shadow of some very worrying international reports placing Ireland in the top three countries for the disorder.
Speaking ahead of FASD Awareness Day, tomorrow, Alcohol Forum’s CEO, Kieran Doherty said, “With a recent study suggesting that 80% of Irish women consume some alcohol during pregnancy, it’s clear we need to work harder to get the message out that alcohol and pregnancy don’t mix. That’s why this FASD Awareness Day we are launching a #Zero for Nine campaign to promote the message”.
Jennifer and her family have been living in Ireland for a year since moving here from England. She was introduced to her first foster child, a beautiful little lady aged 4yrs, in 2009. “At the time, Bella had no diagnosis but needed a great deal of care. I am birth parent to 3 adult children, but I had never heard of FASD until Bella came into our lives. She was a welcome new member to our family, but nothing about our family life would ever be the same again. No mother intentionally sets out to damage her child. So it's important to talk about FASD without blame, shame or stigma.”
When alcohol is consumed during pregnancy, the alcohol in the woman’s blood passes through the placenta directly into the developing baby’s blood. Because the foetus does not have a fully developed liver, it cannot filter out the toxins as an adult can. This can result in damage to the developing brain cells and nervous system at any stage of pregnancy. The impact can range from mild to severe and may include attention and learning difficulties, reduced intellectual ability, developmental delays and sensory issues. FASD is the umbrella term for a wide range of conditions that includes Fetal Alcohol Syndrome (FAS).
A recent Lancet study estimates that there are 40,000 people living with FAS in Ireland. FASD occurs if the foetus is exposed to alcohol. Because of this, the safest message for women who are or are planning to become pregnant is to avoid alcohol.
For many woman they discover they are pregnant a few weeks into the pregnancy and they may worry about any alcohol they have taken. The advice from Alcohol Forum is not to panic. “Drinking while pregnant does not mean the baby will definitely be harmed. The sooner they stop drinking the risk to the baby drops and the better it will be for both them and their baby.
Some women may have difficulty reducing their drinking while pregnant without support from a specialist service. It is very important that they talk to their G.P, Midwife or Consultant to get proper support to start cutting down in a way that is safe for them and their baby”.
Alcohol Forum’s Kieran Doherty is full of praise for Jennifer for sharing her family’s story publicly. “It’s very easy to share the statistics and facts about Fetal Alcohol Spectrum Disorder, but nothing can explain the impact better than a real life story. Jennifer and her family have only recently completed the adoption of their daughter and it’s important that they have privacy at this stage, for that reason we have changed their names.”
Despite being an experienced parent with 3 grown children, Jennifer had to do extensive research and training to keep pace with the complexities of caring for Bella. “We witnessed some pretty spectacular meltdowns and explosive behaviours and were astonished at how she could change so drastically throughout the day, each and every day!”
“One of our Consultants suggested that I look up the UK organisation supporting people affected by FASD and their families. Once I did this, everything we had been struggling to understand fell into place. I was able to attend support groups of birth parents, foster carers and adopters all supporting children with FASD and it helped enormously. If 90% of the solution is understanding the problem, for the first time, I felt I had a real chance. “
“Previously I had trusted the professionals know best, but this was a catastrophe for Bella. I quickly learned, no matter the profession, I had to take the lead.” Every child with FASD is affected differently depending on the stage of pregnancy that alcohol is consumed. “It takes a multi-disciplinary approach to tackle the issues these children face. We’ve been lucky with the support we’ve had and after eight years we have reached a place where things are going well enough that I now have time to look around me and extend a hand to anyone who may be struggling. I've been there and I know how hard it is.”
At some points on their journey Jennifer has felt so overwhelmed that she could only look to the next 6 months. Years later she is able to look back at what they have achieved, “We’ve achieved a great deal, not least - diagnosis, medication, special educational setting and one I am most thrilled about, we adopted Bella and last year relocated to Ireland. My birth children have been epic in taking time to understand Bella’s difficulties. One of my daughter’s even attended evening classes in child development for 18 months so she could become my backup foster carer. As a family we all pulled together.”
“Over the years, with our diagnosis and detailed assessments secured, I have come to expect support and I'm aware, as a family, we still have a long way to go. Teenage years are a challenge for all parents, but especially so for those affected by FASD. When I looked around in Ireland, I struggled to find any support groups for families. This concerned me so I helped setup a facebook support group, FASD Alliance Ireland, and with the support of the Alcohol Forum we had our first meeting, and more are planned. As well as face-to-face, we also had the option to connect via video link with attendees as widespread as Donegal, Cork and Belfast. A support group is important as it allows you to meet others who understand, can listen without judgement, offer helpful insights into caring for children with FASD.”
Overtime Jennifer hopes the group can contribute to the creation of an FASD pathway for Ireland which would include everything from how to approach diagnosis and treatment, to how best to communicate with schools and others, right through to how to contact a support group. Speaking about the need for greater awareness Jennifer is clear that more needs to be done to ensure families and people living with FASD get the support, understanding and resources they need. “It will take time, but more importantly it will take a willingness for Ireland to acknowledge the research which indicates over 600 children per year are born exposed to alcohol in the womb. They and their families need the proper supports in place. These children are out there, the question remains, where?. ”
If you are diagnosed, or suspect you or your child are affected by FASD, you can find support on Facebook @FASDAllianceIreland. If you would like support to reduce your drinking you can contact HSE Drugs and Alcohol Helpline on 1800 459 459.