FACS v FASD -A personal story of parent carer blaming

I have been quite candid in describing my personal experiences of being falsely accused of FII (fabricated or induced illnesses) and institutionalised parent carer blaming, but there were more issues at stake than merely having 2 children with probable autistic spectrum disorders. The sole reason for our having our children placed on the Child Protection Register in 2006 was due to our pursuing medical diagnoses for our children, having been instructed and encouraged, in writing, by social services to do this only 14 months before.

However, the actions of the social services was not only in direct conflict with their previous instructions, but also in direct conflict with the actions of the High Court to pursue further medical evidence and assessments with our children having been both suspected of having fetal anticonvulsant syndrome (or more specifically, fetal carbamazepine syndrome) as a consequence of my wife taking anticonvulsants for her epilepsy in utero. Although independent investigations confirmed all parties accepted that both of our children had FACS, few professionals had any knowledge of this condition and that many affected children also went on to be diagnosed as being autistic, along with many other disabilities.

Social workers in particular seemed to go to great lengths to even consider the possibility that our children could be autistic. The issue remained whether “concerned” parents would want to explore all diagnoses in light of their genetic condition, actions in which social services felt were detrimental to their health. As our children were subject to the FACS Group litigation in the High Court, social services’ own independent investigator surmised that both the social services and local NHS authorities could be acting in a manner prejudicial to the High Court litigation. He later went on to write that he was “concerned that social services may find itself accused of being involved in a potential cover-up” in denying access to diagnostic assessments.

However, even more frightening is that we found records implying that our children had fetal alcohol syndrome, which although likely clerical errors, there remained the possibility that by so doing the image the authorities had was of an alcoholic mother, not an epileptic mother who was taking medication to control her seizures whilst pregnant! I recently contacted the Organisation for Anti-Convulsant Syndrome (OACS) and found that other parents had been under suspicion by local authorities and some children had also been falsely labelled as having fetal alcohol syndrome too.

Upon investigation, I found the two syndromes to present remarkably similar symptoms and almost identical facial characteristics, as I shall now demonstrate.       

 What is Fetal Alcohol Syndrome Disorder (FASD)?

Fetal alcohol syndrome disorders refer to a collection of diagnoses that represent the range of effects that can happen to a person who was exposed to alcohol before birth. These conditions can affect each person in different ways and can range from mild to severe.

Fetal Alcohol Syndrome symptoms include

·        Facial deformities

·        Problems with movement, balance, vision and hearing

·        Learning disabilities

·        Problems with concentration & memory

·        Emotional regulation difficulties

·        Joint hypermobility

·        ADHD

·        Speech delay

·        Developmental delay

·        ASDs

What is Fetal Anticonvulsant Syndrome (FACS)?

Fetal Anti-Convulsant Syndrome (FACS) is caused when a mother uses anti-convulsant medication during pregnancy (also known as Anti-Epileptic Drugs, or AEDs: AEDs are not only used to treat epilepsy but are also used to treat pain, migraine, bi-polar and other mental health conditions).

One of the challenges that can occur for the pregnant mother with epilepsy is that some mothers tend to have more severe seizures during pregnancy. It is because of this that some doctors will up the dosage during the pregnancy which can make the foetus more susceptible to problems during pregnancy. The risk of disability varies according to the specific drug taken; however, there are some patterns to be seen in them all.

Fetal anticonvulsant syndrome(s) are/is not a 'genetic' condition in the usual sense but current opinion is that it is in the way these drugs are metabolised by some pregnant women, and/or their affected children, predisposes the unborn baby to damage.

Symptoms of fetal anticonvulsant syndromes include:

·    Spina bifida

·    Cleft lip and palate

·    Facial deformities

·    Limb defects

·    Ear malformations

·    Skeletal malformation

·    Heart, kidney, and/or urinary tract abnormalities

·    Joint hypermobility

·    Speech Delay

·    Developmental delay

·    Autism Spectrum Disorders (ASDs)

·    Attention Deficit Hyperactivity Disorder (ADHD)

Facial features compared

FACS features may include:                                       FASD features may include:

-epicanthic folds                                                          -epicanthic folds                                                                                                                                     

-an infraorbital groove                                                 -an infraorbital groove          

-flat nasal bridge                                                         - flat nasal bridge                                                                                   

-short, upturned nose                                                     -short, upturned nose

-smooth or shallow philtrum                                         -smooth or shallow philtrum

-a long thin upper lip                                                      -a long, thin upper lip

-small head circumference                                             -a small head circumference   

   Conclusion

In my many conversations or appointments with health or social care professionals, I have yet to find any non-geneticist with any knowledge or experience of fetal anticonvulsant syndrome. The same cannot be said about foetal alcohol syndrome since there is considerable literature and information about this. In most cases, mothers whose children present as having symptoms of foetal alcohol syndrome will be subjected to child protection procedures and many will have their children taken into care. I do not want to demonise these mothers, as there may be a number of valid reasons why they feel unable to moderate their alcohol intake whilst pregnant.

However, it is deeply disturbing that epileptic mothers should be victimised if their children develop teratogenic effects from exposure to prescribed, potentially life-saving medication whilst in the womb. What is also equally disturbing is that like autistic mothers, epileptic mothers, or mothers of children with rare diseases or syndromes, too often have their genuine health concerns for their children dismissed and fall victim to institutionalised parent blaming.