If there is someone in France interested in knowing if there is external cause in the unusual number of births of babies without an arm or a hand that is François Chartier. This Parisian is the father of a four-year-old girl who lacks a forearm, because he was born with superior transverse agenesis, a congenital malformation characterized by the total or partial absence of the upper limb.
Chartier as well is one of the spokespersons for Assedea, the association that gathers -and advises- the parents of children born with this malformation, whether in upper or lower limbs, and affecting about 360 newborns every year in France (150 born without an arm, forearm or hand). He says he applauds the decision of the French health authorities, who have launched a national investigation after increasing to 18 the suspicious cases registered in a very localized area of the department of Ain, in the east of the country, which would join two already confirmed agglomerations in the western regions of Brittany and the Loire-Atlantique. But it also has a very specific list of demands for those authorities, starting with a more rigorous count of the cases and that excludes, in a specific way, external factors such as pollution or pesticides.
"We are satisfied with the announcement of a national investigation because we see that today there is a real awareness of this matter," Chartier explains in a telephone interview. "Until now, they had told us good, there is not a single cause, circulate, that there is nothing to see", recalls about the first investigation, closed at the beginning of October – before 11 more suspicious cases were known in Ain besides the seven already confirmed – without the authorities being able to establish a cause for this unusual high number of cases so concentrated in a single area, taking into account the statistics.
The investigation will last about three months. And, as he said the Minister of Health, Agnès Buzyn, it is not going to discard "no clue", nor that of pesticides, nor of medicines, nor any other. A position that Assedea supports. "Within the association there is a debate, there are people who, openly, think that they are pesticides. But it is not shared by everyone. As an association, we do not intend to pronounce ourselves in favor or against one or another assumption. We prefer to remain open on the issue, because clearly, today, you do not know "what is causing these malformations," recalls Chartier.
Of course, he says: "The only thing we say is that, if at a moment there is a concentration of cases that can be explained by risk factors that can be eliminated, then the necessary investigations must be made. It is necessary to get to the bottom to be sure that there are no external factors, "he insists.
Therefore, he continues, the efforts launched should not be limited to the announced national research. For the Assedea, it is as much or more priority that the authorities also make an effort to know better the amplitude of the problem. Which implies, Chartier emphasizes, the need to create more and better records and coordinate them at the national level. That is, he says, the main claim of the parents of children with agenesis.
And today, recalls Chartier, in France there are only six records of congenital malformations: two in the region of Rhodos-Alpes, another in Brittany, one in Paris and two more in French territory outside the Hexagon: the Antilles and on the island of La Réunion. "They only cover 19% of the population," said the spokesman.
"What we would like is that other registers be created in all the territories, regional registers and a national coordination to be able to locate the agglomerations of cases", summarizes. Because only then, he says, "there will be, statistically, less risk of overlooking other cases."