There will probably never be an answer to the questions posed to parents of children born with one arm, a forearm or a hand at least in the Ain, Morbihan, and Loire-Atlantique
Such is in substance the conclusion of the group of scientific experts convened in October at the request of the ministry of Health to resume the investigation of these birth defects are rare, known as agenesis transverse of the senior members (ATMS). After four months of work, the committee was made public Friday, July 12, its first report, presented the day before to the families and to the director of the registry for epidemiological Remera, Emmanuelle Amar, who initiated the alert. The recommendations of the twenty experts, drawn up in a document of 250 pages, join, finally, those made in the fall of 2018 by public Health, France who had stopped his research without having found common cause with the malformations that occurred closely in time and in space. The outcome, misunderstood by the family, had given rise to criticism as well as scientific controversy.A 1. .7 birth out of 10,000″We have worked in emergency because of the excitement aroused by the affair and independence, assured the Pr Alexandra Benachi, president of the committee of experts and head of the department of obstetrics and gynecology of the hôpital Antoine-Beclère of the city of Clamart. Our first action was to resume all the medical records of the children concerned to verify the diagnosis. The ATMS is indeed a congenital anomaly is very specific for a 1. .7 birth out of 10,000. ” Several children, with another type of malformation, were excluded from the survey at the end of this analysis. Three cases have been confirmed in the Morbihan region, six in the Ain department, and the investigations continue in the Loire-Atlantique department without registry. ” READ ALSO – 7 questions to understand the case of babies born without arms,” The committee is then given the mission to return to zero the calculations in order to validate, in each department, the existence of a cluster, that is to say, the number of cases is higher than what one would expect statistically.
Again, as a public Health France previously, the committee concludes that it is an absence of excess cases in the Ain and closes the file. The period taken into account was reduced from 2011 to 2015.
The experts specify that they used the same test as Remera, the method of Kulldorff, after being assured of its relevance to the science itself.
“We can reassure pregnant women,” the Pr Benachi Only the cluster of Morbihan is at this stage confirmed. But little, because it is “at the limits of significance,” says the Pr Benachi, pending other results. And it is not yet excluded that the three births of babies with ATMS in the village of Guidel at eighteen-month intervals, are also “the result of chance”. Further investigations will, however, be launched, allowing to study on the basis of data on the exposures of the parents to environmental risk factors. However, warns the Pr Benachi, even if the potential causes were to be released, “accountability complete would be very difficult to establish”. In order to identify comprehensively the risk factors of congenital malformations, experts have also undertaken a literature review on a 21,000 scientific articles the results of which are expected by the end of 2020. “This monumental work, which has never been achieved will be the basis for the future,” says Anses. The report also recommends the implementation in the Russian federation, registers of existing monitoring, which cover 19 % of births, and the creation of a seventh register in the region of Aquitaine.
“This story has terrified much of the world to finally a single cluster” noted the Pr Benachi, stressing that the frequency of congenital anomalies has remained stable in France between 2009 and 2016.
“We can reassure pregnant women. “The families say they are dissatisfied with “We have the feeling that we are in the process of preparing us to what we never find the cause of these deformities,” said Samuel Bernard, the father of a 6 years old daughter born in Guidel (Morbihan), Thursday evening, following the presentation of the first investigation report of the committee of scientific experts. And his case is not isolated. A same voice, the parents of children born with agenesis of the transverse of the senior members (ATMS) say they are “dissatisfied”and “disappointed” by the recommendations of the report. “After months of waiting and reminders, the committee retains a cluster (the number of cases is abnormally high, editor’s NOTE) on three, and does not offer much, apart of the new research in databases”, complains the father of the family breton.
“We waited for more answers today, hypotheses more concrete, products suspected, but nothing”, regrets for his part Isabelle Taymans-Grassin, the mother of a child concerned was born in the Morbihan, while Flavie Benizri, a representative of the association of assistance to families of children born with a malformation of the members Assédea, complains: “They will not browse the track of the products (pesticides) contraband,” which have been the subject of foreclosures. Scratched during the presentation of the report, Emmanuelle Amar, the director of the surveillance registry Remera, which is located in the Ain department, at the origin of the alert, said, “sorry,” by this outcome. “It’s going to have to announce to the families that they are not in a cluster. ” Interviewed by the scientist, the epidemiologist had suggested several avenues for the investigation. “We will respond point by point to this report in the form of a scientific publication”, she said. Families will be received at the beginning of September by the director-general of Health, who should discuss the roadmap for the coming months.
“We can’t be satisfied to say that they have not found a cause, it is unbearable,” said the minister of Health, Agnes Buzyn, in October, while the first investigation was stopped for lack of tracks tangible. . .