Babies born without arms: whistleblowers will be dismissed

Emmanuelle Amar, CEO of Remera, and her entire team, were summoned to an interview prior to the dismissal for December 31st.

"The motive is very clear: as these are contracts under public law, the dismissal does not exist economically, however, it is a dismissal for loss of position." Simply because the CHU Lyon has not received the financing for the year 2018 to finance our salaries ". At the microphone of RTL, the researcher who revealed the case of babies born without arms in the Ain announced that she was summoned to an interview prior to the dismissal for December 31 next.
Emmanuelle Amar, General Manager of Remera, the Rhône-Alpes Malformation Registry, also explained that her entire team was also called for the same reason. A procedure that, according to her, is due to the alert they have launched, including asking to meet the Minister of Health Agnès Buzyn.Face seven children born without arms or hand between 2009 and 2014 around the village of Druillat in Ain, the experts do not agree. The Remera structure, which specializes in the identification of malformations, speaks of an "abnormal concentration" of these cases, while Santé Publique France considers that "the statistical analysis does not show an excess of cases compared to the national average. ".
Everything started from a confidential report sent by the Remera structure, specialized in the census of malformations, to the health authorities and revealed by a report from France 2. He reports an anomaly: a concentration 58 times greater than normal of children born with a malformation in the arm or hand.

The ultrasounds did not reveal anything to the parents

The story features Ryan, an eight-year-old, born without his right hand. A shock at birth since the ultrasounds did not reveal anything to the parents, Mélanie and Jonathan Vitry. "I cried, of course, and my husband fell in the apples," recalls the mother. Ryan is one of eight children living around the village of Druillat, within 17 kilometers, born between 2009 and 2014 with a malformation. What to alert the specialized Remera that sent a report to the health authorities at the end of 2014.
For the moment, no medical explanation justifies this concentration of poorly trained newborns in this commune. The only thing in common: mothers of children born in arms live in rural areas, near fields of sunflowers and maize. Still, "this case is becoming a health scandal, the denial pushed to the extreme of Public Health France questions us," said epidemiologist Emmanuelle Amar. "They are mistaken, they assume that the rate is not abnormal, because there were seven cases from 2000 to 2014. But this number was recorded over a much shorter period, between 2009 and 2014. Comment can we say that there has been no case before? It is impossible to know, there was no monitoring of malformations before 2009 in the Ain! We did not support this department! "

"Public Health France has not identified a common exposure"

For its part, Public Health France recognizes the number of cases, but believes that there is no particular problem. "Today, following the investigation of the 7 cases reported in Ain born between 2009 and 2014, the statistical analysis does not show an excess of cases compared to the national average, and Public Health France does not has not identified a common exposure to the occurrence of these malformations.The absence of a hypothesis of a possible common cause does not guide further investigations, "says the agency.
These experts also conducted similar investigations on two reports in the Loire Atlantique (3 cases born between 2007 and 2008) and in Brittany (4 cases born between 2011 and 2013). For the Loire Atlantique and Brittany, the investigation concluded to an excess of cases. However, as in Ain, no common exposure has been identified for the clustered cases of these two regions. In this context, "the Agency maintains with the French network of registers a particular attention to the occurrence of new cases in these regions and in the rest of France". In other words, no particular action is going to be undertaken.

Public subsidies granted to Remera have been cut

This battle of experts becomes even more troubling when we know that the public subsidies granted to Remera, who has been working on this issue for 45 years, were cut this summer. "The consequences are very simple, it's the end of monitoring malformations, that is to say, clearly the end of the alert too," insists Emmanuelle Amar. The region is simply saying that this is no longer part of their remit. Inserm justifies the abandonment of subsidies by saying that "the contribution of the register for research is very low". A comment that questions since two years ago, the former Minister of Health Marisol Touraine praised the work of Remera.

Each year, in France about 150 children are born with a malformation of one or more upper or lower limbs: arm, forearm, hand, foot, shin, fibula, etc. We then speak of "agenesis or congenital amputation", corresponding to the absence of formation of a limb during embryonic development, and "dysmelia", which means a malformation of one or more limbs. This is a maximum of one and a half cases per department and per year.

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