Anna's Story of Foetal Alcohol Spectrum Disorder
At NHS SMPA, we feel it is important to hear the voices not only of staff with clinical expertise, but also of people who are experts by experience. This FASD awareness day, we’re pleased to feature a guest blog from Anna, parent to a child with FASD:
One of the things I am passionate about getting truer on is a disability that is so common, it probably effects between 6-17% of the population but is so stigmatised that hardly anyone has heard of it.
My 5 year old son is one of the millions affected. His brain, central nervous system and body were damaged by being exposed to alcohol while he was developing in the womb. As a result he has a lifelong condition called fetal alcohol spectrum disorder or FASD.
Alcohol, or ethanol to give it its chemical name is a teratogen. This means it is a toxic poison for a fetus which crosses the placenta and the blood brain barrier with ease, and which the growing baby’s body is unable to process. It is more harmful to the fetus than smoking and other drugs and acts like a scattergun, damaging the brain, central nervous system and body. This can result in a wide spectrum of permanent, lifelong disabilities and birth defects. Research in The Lancet found that there are 428 conditions co-occuring with fetal alcohol. And my own research produced a 15 page long document of the unbelievable havoc that alcohol wreaks on the developing fetus.
Too numerous to list in detail, some of the effects include physical damage throughout the body, changes to DNA, altered immune responses, altered hormone functioning, difficulties with executive functions like planning, problem solving and cause and effect, emotional dysregulation, speech and language issues, attachment difficulties, raised anxiety, learning disabilities, cognitive issues, distractibility, memory problems, sensory processing disorders, behavioural disorders including demand avoidance, oppositional defiance and physical and verbal aggression, mental health problems, tic disorders, autistic like traits, attention deficits and hyperactivity and developmental dysmaturity. To name but a few!
If people know about the harm caused by fetal alcohol they often assume it needs to be at very high levels, and have an image of it only being a problem for alcoholics. In fact, mounting research is increasingly showing that even low levels of alcohol in pregnancy can do damage. One study found that just one unit of alcohol stops the fetus’ breathing and movement for up to two hours, another that neurotransmitter systems in the developing brain can be affected by exposure to low levels of alcohol. As few as two drinks a month can affect a baby's IQ and research also found that any amount of drinking in pregnancy can change the way the baby’s face forms. Despite such shocking evidence of widespread alterations, many continue to insist that some drinking whilst pregnant is fine and one study found that as many as 60 – 70% of mothers reported drinking some alcohol in pregnancy.
Those who know about harm from high levels may have heard of fetal alcohol syndrome or FAS. This is a diagnosis that depends a lot on physical features such as obvious facial differences and growth restriction. Facial differences are believed to be caused between the 10th and 20th week of gestation. and, whilst many of those with fetal alcohol effects will have very subtle facial features, only one in ten will present with obvious ones. Many are also average sized or even particularly tall or big for their age.
To account for the rest, (as if things weren’t complicated enough!) there are four other labels in addition to FAS that come under the collective umbrella of FASD. What I think many professionals and societies around the world have yet to fully comprehend is the full extent, range and spectrum of effects that exposure of a fetus to alcohol can cause. The effects vary so much because they depend on so many variable factors: age of the mother, birth order, genetics, nutrition and other drugs and smoking in pregnancy, stress levels in pregnancy, timing and dosage of the alcohol.
My son is an example of not fitting in the full FAS category. Our adoption social worker reassured us that he wasn’t diagnosed with fetal alcohol syndrome and was meeting all his milestones and developing normally. But, following increasing concern about his development, we did our own research, and sought a diagnosis.
The journey to diagnosis can be a long and frustrating one for many families fraught with misdiagnoses and professionals with little to no knowledge of the condition. Following a visit to a paediatrician who tried to insist we go down the autism route, we were lucky enough to see a geneticist who knew about the subtle effects of fetal alcohol and agreed our son has FASD.
Recognising and diagnosing this condition can be scary. And with the list of its potential effects, this isn’t surprising. But rather than steeping it in denial and stigma, grappling with the fear and truths of fetal alcohol is essential.
On a societal level, we need to have proper prevalence studies so we can finally start to get to grips with how common this condition is and how much it exists along a spectrum. We also need so much research, funding and understanding so that we can start to really prevent, treat and support those living with this life changing disability. As a society we could see vital improvements in mental and physical health, crime rates, school exclusions and family life. And we could save a LOT of money.
On a parental level understanding this condition means I get why my son has the symptoms he does. When faced with the most challenging behaviours and the searing emotions of rage, grief, shame and sadness that these bring up, it is really hard to feel empathy.
But understanding that the behaviour is symptoms of brain and CNS damage means that more empathy is at least possible. It means we can manage on our own emotional regulation better and try and give our son the things that he needs. And it means we don’t spend our lives fighting the wrong fights. We can understand just how hard he is trying and how amazing he is. We can help him understand his condition and help him find strategies to deal with life. And crucially we all have the potential to suffer less if we can understand rather than blame the symptoms of fetal alcohol and those living with it.
Róisín Reynolds and Rachael Nielsen from Greater Manchester Health and Social Care Partnership will be running a workshop about Greater Manchester’s Alcohol Exposed Pregnancy programme at NHS SMPA’s Annual Conference.