I can’t stop thinking about this number. I try to shake it. I walk away from the computer. I divert my attention. I try to block it out. But eventually, there it is again. Stark. Cold. Flawed, perhaps. But it cannot be ignored.
According to a March 2016 study based on data from Alberta, Canada, this is the average life expectancy at birth of a baby born with Fetal Alcohol Syndrome. It means that statistically, using standard scales used to estimate these things, the professionals assume that half of the people with Fetal Alcohol Syndrome will live longer than 34 and half will live less than that. This is a limited figure, a guess. It deals with only one part of the Fetal Alcohol spectrum. Quite probably the people you and I know with FAS will live much longer than this number. We shouldn’t dwell here for too long. But neither should we ignore it. We absolutely cannot ignore it. And especially not on Fetal Alcohol Spectrum Disorders Awareness Day (9/9). FASD is not just about the never-ending arguments about whether or not a pregnant woman has a ‘right’ to drink alcohol. It is about confronting this statistic.
This number is so grim, I asked some trusted adults with FASD their opinions about raising this issue. Their replies humbled me. They want the word to get out. They don’t want things to be ‘sugar-coated.’ One said he believes from his experiences it is likely to be 100% true. Another said he himself would probably not be here today if he did not finally get the diagnosis as an adult. This number is not easy. I write this post as a lay person, not fully familiar with the statistical models used, and with awareness that nothing is carved in stone when it comes to these sorts of figures. And yet, even knowing the limitations and even worrying about possible repercussions, I cannot grapple with this international FASD Awareness campaign and keep silent about this figure.
Somehow in the reporting, public information and policy discussions, the devastating impact on the individual of the brain injury of FAS and the 400 co-occurring conditions is ignored. We push that away. It’s too easy to do. The internal damage is invisible while the behaviors are quite apparent. It’s easier to blame, label and ostracize those affected than it is to help them.
So society focuses instead on ‘behavior’ and ‘parenting’ and sidesteps the underlying issue. No one likes to tackle the stigma. We wallow as a society in the murkier waters – debating endlessly the limits of what is known about prevention and prevalence. People want ‘facts’ but they don’t want to fund the studies that they say we need before policy can change.
Meanwhile our kids are dying from a preventable injury. Their damaged brains and other internal systems make their every day a struggle in this overwhelming world that seems not to care.
Rather than dealing early and directly with the medical issues arising from the primary prenatal trauma that these kids have suffered, society only reacts once the secondary issues kick in. Without proper diagnosis, intervention, therapy, educational strategies, and support, trying to cope with their inner chaos leads too many of those affected to drugs, violence, addictions, unplanned pregnancies, extreme behaviors and unleashes related psychological issues. Only then, once their behaviors spill over, only at that point, yes, the public is willing to spend money – on prisons, on court orders, on foster care for their offspring – but rarely on helping the individual cope with their disability.
Alcohol is a teratogen. It crosses the placenta. An undeveloped fetus cannot process the alcohol so it stays there longer than it does in the mother. It is a solvent, I picture it sizzling its way through the unprotected systems of the growing fetus. Zapping out bits and pieces and potential.
Kids with FAS quite often literally have parts of their brain damaged or even missing – including the parts that bridge the left and right side of the brain – parts that are required for thinking in abstract terms, in helping to regulate emotions. Kids with FAS have tiny head sizes because the brain has not fully developed. They often have problems with their spines, their bones, and other organs. For an FAS diagnosis, a child exposed to alcohol in utero must have certain facial features – visible and very specific damage that happens early in the pregnancy. But while this study over life expectancy focused only on FAS kids, the impact can be equally severe in other kids on the spectrum but who do not have these facial features only because the injury to their brains happened at another point in the pregnancy.
There is a deep, deep prejudice in our policy making circles and in the medical community that makes dealing with these brutal realities extremely difficult. Stigma runs deep. Parents seeking diagnosis are often turned away – even when there is proof that the child was exposed to alcohol in the womb. They are warned not to “label” their children. This condition is not taught properly in most medical schools, many doctors and nurses do not have current information. There is no ‘post-diagnostic protocol’ in the UK, which means care is inconsistent or non-existent for those ‘lucky’ individuals who get a diagnosis. Many with FASD are misdiagnosed either intentionally or unintentionally. Parents are told to be glad if their child has a low IQ or a co-related autism diagnosis as these two things can open some of the necessary doors.
This gap in care leaves families in a desperate no-man’s-land. They are given knowledge that their child faces a lifetime of difficulty since there is no cure for this brain injury. They are aware of the grave statistics. They know that the way to beat the odds is through following expert guidance on ways to adapt the environment around the child to accommodate their special needs. They know that special training is needed for educators. They understand that medical attention and therapy for co-related conditions is urgent and life-changing. They know there are ways to challenge these statistics, but they are rarely able to access these services.
So they are faced with this number.
They swallow their panic. They suppress their frustration. They turn a patient face and a smile toward their young one again, and again, and again. At least, they try.
This statistic can change. A child born with Cystic Fibrosis now has a life expectancy at birth of 40. In the 1980s, it was less than 20. A child born with Downs Syndrome has a life expectancy of 50-60. In the 1980s the figure was 25.
Here’s another statistic.
In one year we could eradicate nearly all new cases of FASD. We could theoretically wipe out this brain damage in less than one year – nine months in fact – if our political, medical and scientific leaders would just say it straight (like the US CDC did) – if you are having sex, use birth control or don’t drink alcohol. If you are pregnant, don’t drink.
We could in theory wipe out FASD if they would put in place supports for women who are struggling, help those who are in abusive relations or dealing with alcohol addiction, if the families and friends around pregnant women would create a supportive environment, if we tried, really tried to support those who are vulnerable and who might become pregnant. Of course it is not so easy and, yes, there will always be cases where women unknowingly or unwittingly expose their fetuses to alcohol. But – dreaming a little – I cannot think of another such leading cause of brain injury and disability that could be tackled so swiftly.
This is a number used widely by FASD awareness groups. They use the number to encourage zero alcohol for the nine months of pregnancy. It’s a number that resonates. I totally agree prevention is best.
But I would encourage us all to keep in mind this other – uglier – number.
We are cutting short lives when we ignore the needs of those people among us who have the hidden brain injury of FASD and its related conditions.
I refuse to let that be a number that overshadows my son’s life. That’s why I write. That’s why I encourage you to learn more about this condition. That’s why we engage with the FASD community here and internationally.
It is not just about awareness. It’s not just about prevention. It’s not about being a pesky parent in the school or the one who tries to push the boundaries of the NHS, the relative who harps on and on about something no on likes to talk about.
In every way we know how, we are quite literally fighting for our son’s life.
[Editorial comment/update – since originally publishing this post, we have come to understand the very limited nature of the research quoted. We are leaving this post up because we do believe that issues relating to life expectancy and quality of life for those with FASD need to be further researched. We are fighting for our children’s lives.]