Fetal alcohol syndrome: a silent disease
Beer, wine, cocktail: when a pregnant woman drinks, the alcohol directly crosses the placenta and is supplied by the fetus. Alcohol is potentially harmful at all stages of pregnancy, even when the mother does not know she is pregnant. “There is no threshold before which the consumption of alcohol is not dangerous”also reminds the Superior Council of Health on this subject.
The first three months of pregnancy, however, are the most dangerous. This is when the neural tube, the precursor to the brain, forms. But “There is no safe time for drinking alcohol during pregnancy. There are only times that are worse than others”, insists Dr. Thomas Orban, general practitioner and alcoholologist.
Regarding pregnancy and breastfeeding, the message from the Belgian government and the FPS Public Health is clear: “do not drink alcohol during the desire for pregnancy, pregnancy and lactation”. “The tolerance threshold does not exist. And there is no type of alcohol that would be more dangerous than the others. Ethanol is ethanol and it is harmful”, says Dr. Orban. The consequences are multiple and rarely benign. But “more than 30% of women continue to drink during their pregnancy in Belgium”.
A multifaceted disease
“FAS is the leading cause of mental retardation in the Western world before trisomy 21”, according to the WHO. It concerns 9% of births per year in the rewarded countries. In Belgium, we do not know the exact number of people known, there are very few studies and prevention on the subject.
The syndrome, in its so-called form “Completed”, can manifest as growth retardation and physical malformations. Affected children have a particularly recognizable face: they have little or no upper lip, they have a small nose and an underdeveloped jaw. In these cases, the diagnosis is simple.
For all other children, fetal alcohol disorders are varied: behavioral problems, learning disabilities or social skills. The diagnosis is then more difficult and it often remains at the stage of suspicion. “The spectrum is very broad, and it’s not always easy to make the link with fetal alcohol” said Dr. Orban.
Many patients will be unable to be independent and able to live in society. Among our French neighbors, it is the first cause of social maladjustment, according to Inpes, the National Institute for Prevention and Health Education.
What help for patients and families?
“This is an area that has been very little investigated by caregivers” says Thomas Orban. There is no organization specializing in the management of FAS in French-speaking Belgium that helps known people and their families. Those who seek help are obliged to turn to French associations.
Catherine Metelski is president of one of them, Living with FAS. Adoptive mother of an affected child, she decided to create the association with her husband in 2012. “We couldn’t let other families go through the same nightmare,”she says. Very few birth mothers have joined Living with FAS. “The reason is often the guilt of having made your child sick. But also the fear that custody will be taken away from them. There is a lot of denial too”says Catherine Metelski.
A few years ago, she published a “Guide for Parents and Caregivers”. We learn that children are easily influenced because they give a lot by imitating others, especially regarding the absorption of alcohol. But they have a cerebral vulnerability that makes them much more prone to addictions. When addiction is installed, they are resistant to treatment. The guide also lists good practices to have at home, at school and in society to help the child. For example, “how to avoid legal trouble”or “how to learn to manage your money.” So many everyday things that will be difficult for the sick.
According to the association Nadja, the medico-social care of a child with FAS amounts to more than 110,000 euros in France. For Belgium, no figures are available. FAS is not recognized as a disability, but some of its symptoms are.