Parents are looking for answers about babies born without arms in France


Date created:

Parents, health professionals and advocacy groups met for the first time in Paris Thursday as part of a new committee to examine mysteriously high rates of congenital malformations in three regions of France.

French hthe health mThe minister formed the committee earlier this month in response to growing alarm over a Numbers newborns with a rare defect called upper limb reduction, which occurs when part or the entire arm of a baby is not formed completely in utero.

A separate A group of scientific experts has also been convened to "identify and analyze" the potential causes of the condition, which remains up to here a mystery. It will meet for the first time in early March.

France 2 broadcast a report in September sure the exceptionally high rates of reduction of the upper limb in the Rhônes-Eastern Alps region between 2009 and 2017. At least seven babies were born with the defect during this period in the small rural region of Ain, according to a study conducted in 2014 by REMERA, an organization by the National Health Agency (Public Health France or SPF) with surveillance of congenital disorders in the area.

With less Each year, more than 150 cases were reported nationwide, and this number appeared disproportionately high.

The story quickly spread public attention, the SPF announced on October 4 that it had opened an investigation into the situation in Ain.

Surveys have also been launched on Morbihan and Nantes regions of western France. In Morbihan, four women gave birth to babies with abnormalities of reduction of the upper limb between 2011 and 2013, while three cases were identified in Nantes between 2007 and 2008.

While the FPS has confirmed the number of cases in Morbihan and Nantes, it did not reach the same conclusion in Ain, where "statisticals do does not show an excess of cases compared to the national average ".

He added that no apparent cause could be found for the flaws, despite in-depth interviews with affected families.

"We warned them for years"

REMERA challenged the evaluation of the situation in Ain by the SPF,saying it was flatoff badly.

"They had to cover for years and years of silence. For years, we warned them that an abnormal phenomenon should be investigated … And the FPS has never reacted, "said Emmanuelle Amar, director of REMERA, FRANCE 24 while she was preparing for the committee meeting.

"When the [[[[scandal] erupting in October 2018, they preferred to say that there was a divergence of scientific opinions. "

The FPS reversed its initial position on the Ain end of October, following the discovery of 11 additional incidents of congenital disorders in The area. The agency also announced a new national survey on the problem. Amar however told FRANCE 24 that these new cases were not related.

"These children, who are all older now, are born with defects, but not with reduction of the upper limbs. They had different deformities, kidneys or feet for example. They have nothing to do together. "

Yet with so many questions remaining unanswered, many families of children born with a lower extremity were left frustrated by the way the problem was treated.

"The main reaction is disappointment," said Amar, adding that she was attending the meeting on Thursday with a mother coming to ask for explanations. "These women are angry. If we had taken precautionary measures from the beginning, they would not feel that they had been abandoned. "

Amar said the SPF had taken a long time to acknowledge the problem of Ain, as the agency was unable to coordinate an effective response.

"If we could have informed the problem of all the obstetricians in the area, they could have done a thorough screening," she said. "When they found that they were missing a hand, they could have taken samples of amniotic fluid and meconium in the baby, as well as hair samples from the mother at birth.", to test xenobiotics to better understand what they could were exposed to."

Several hypotheses have been put forward as to a possible cause of defects in the three regions – such as the use of pesticides on neighboring farms – but nothing has yet been proven.

The Ministry of Health, however, hopes to clarify this mystery by June 30, when it expects its group of scientific experts to report on its findings.


Source link