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14:20

France: Case of children missing limbs remains unanswered amid erratic govt. investigations

France, Brittany
January 30, 2019 at 07:18 GMT +00:00 · Published

Brittany resident Aurelie Bingler has seen her seven-year-old girl going through life without a hand since 2011, when she gave birth to a baby diagnosed with a congenital deformity to her right arm.

"I could tell by his [gynaecologist] look. I could see him looking and checking. I could tell that something was wrong," Aurelie said recalling the moment she first heard that her baby girl would be born without a right hand.

Mother of seven-year-old Lola, Aurelie said that despite being accustomed to seeing people with deformities as a nurse, she was still shaken when she found out.

Aurelie is one of many families to which French authorities are yet to provide an explanation as to what has caused the congenital malformations in their children.

Fifteen other children born with missing arms were registered by the authorities in three clusters located in three French departments between 2007 and 2014. Four cases were registered in the Breton department of Morbihan - specifically, in the town of Guidel - between 2011 and 2013, three cases in the western department of Loire-Atlantique between 2007 and 2008 and eight cases in the eastern department of Ain between 2009 and 2014.

France kicked off a second national investigation into the number of babies being born with missing hands or arms in October 2018, two weeks after the closing of an initial inquiry.

The first investigation was concluded last autumn with representatives of the national public health agency Sante Publique France (SPF) admitting that they failed to find an explanation as to why babies were being born with missing limbs since 2007.

The first inquiry's failed conclusion caused concern among parents. "We haven't been contacted [regarding the case] for about - our children are three and half and seven years old and the inquiry started three years ago, so we haven't been contacted ever since," one father of a child with congenital deformity said during a meeting between SPF representatives and parents in Guidel.

Aurelie, who lives in the Morbihan department town of Calan, said she received a letter from the SPF during the first inquiry asking if she had lived in Calan during her pregnancy, only to never hear from them again.

"We have never been compensated, we never received anything like the families in Guidel, we got nothing, we were completely forgotten," said Aurelie, surprised that her family wasn't part of the cluster while living only 20 km [12 miles] away from Guidel.

"I wasn't the only one, it wasn't just Guidel in this case," Aurelie said.

The story of babies born without upper limbs came to the spotlight when an epidemiologist named Emmanuelle Amar, the director of the public Lyon-based Remera health registry, wrote a report alerting the Health Ministry of an alarming number of cases accumulating in specific rural areas back in 2014.

"In 2010, we warned the health authorities, we created a report in order to say one must pay attention to what is happening. And health authorities didn't understand the importance of it, at that moment, because the health authorities didn't have the personnel at their disposal who would have understood exactly what was happening," Amar said.

"It's one birth for every 10,000, and there, we have it at seven births among 6,000. So, truly, this is called an excess of cases. And we continued signalling the authorities who didn't want to listen to our call," explained Amar, who received a letter of dismissal last October from the parent body, the state-funded hospital Hospices Civils de Lyon (HCL) - citing insufficient state funds for the sustenance of Remera in the following year.

The letter was suspended though after in October Health Minister Agnes Buzyn ordered a fresh nationwide investigation into the matter to be conducted by SPF.

Interestingly, SPF is the same agency that had conducted the first inquiry and failed to establish the existence of an issue.

For former Environment Minister and MEP Corinne Lepage the French government has a habit of "sweeping the dust under the rug" despite the existence of a precedent for diseases linked to pesticides like the glyphosate and health scandals (BPA scandal) that rocked the French community in the past. "I thought that there was an issue. Because I knew the way the French administration works well. I know - how to explain this - the trouble of trying not to 'panic' the public," Lepage said. "Even in the area [of congenital malformation] I think there are more cases that haven't yet emerged, but I might be wrong, I don't know. I have a feeling," Lepage added.

According to SPF director Francois Bourdillon the agency has "come to regret" its inertia and will now "try to find answers" that could explain the probable causes behind the emergence of congenital malformation in Morbihan. "I believe it was important to go public because the aggregation of several cases has created a lot of stress to the community of Guidel," Bourdillon said.

Speaking about the possible causes, Bourdillon said "the exposure to drugs, the dietary habits -there are a lot of pesticides in the food- we look at the professional exposure, at the household products, the water quality," have been studied. "Probably it has to do with 'cocktail effects' probably at a certain moment children are more fragile and that leads to the development of an anomaly, a toxicity that results to congenital malformation."

According to the SPF director, there are "1,200 cases of reported congenital malformation in the region of Brittany," but the agency is still unable to identify the factors that have led to them.

"It could be environmental factors at the origin of these deformities," Amar said after pointing out that "the common points" between the families "were that they were all in a rural area."

The affected parents are still looking for answers. The meeting between SPF and the community of Morbihan Guidel appeased the spirits but made room for additional questions around the ability of the agency to identify a link between rural living and the apparition of the disease.

Returning from this meeting, Aurelie admitted feeling relieved, "as mothers we can see that it doesn't come from us and that makes us feel better."

However questions regarding the failure of the first study and the exclusion of families outside of Guidel remained unanswered.

"In Calan, we are surrounded by agriculture, fields, so we naturally wonder about the use of pesticides. Why doesn't it happen to people who live in the city centre?" Aurelie said. Aurelie's wish is just, she said, "to have answers. And now I'm thinking that if one day she asks me, I will know what to answer. I will know what to say and explain to her why she is like that. And for her, later, it will be good to understand where it comes from."

The French government is due to release a preliminary report on its current investigation on January the 31st .The report however is just expected to explain the methodolgy of the inquiry as well as the composition of the scientific commettee.

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Description

Brittany resident Aurelie Bingler has seen her seven-year-old girl going through life without a hand since 2011, when she gave birth to a baby diagnosed with a congenital deformity to her right arm.

"I could tell by his [gynaecologist] look. I could see him looking and checking. I could tell that something was wrong," Aurelie said recalling the moment she first heard that her baby girl would be born without a right hand.

Mother of seven-year-old Lola, Aurelie said that despite being accustomed to seeing people with deformities as a nurse, she was still shaken when she found out.

Aurelie is one of many families to which French authorities are yet to provide an explanation as to what has caused the congenital malformations in their children.

Fifteen other children born with missing arms were registered by the authorities in three clusters located in three French departments between 2007 and 2014. Four cases were registered in the Breton department of Morbihan - specifically, in the town of Guidel - between 2011 and 2013, three cases in the western department of Loire-Atlantique between 2007 and 2008 and eight cases in the eastern department of Ain between 2009 and 2014.

France kicked off a second national investigation into the number of babies being born with missing hands or arms in October 2018, two weeks after the closing of an initial inquiry.

The first investigation was concluded last autumn with representatives of the national public health agency Sante Publique France (SPF) admitting that they failed to find an explanation as to why babies were being born with missing limbs since 2007.

The first inquiry's failed conclusion caused concern among parents. "We haven't been contacted [regarding the case] for about - our children are three and half and seven years old and the inquiry started three years ago, so we haven't been contacted ever since," one father of a child with congenital deformity said during a meeting between SPF representatives and parents in Guidel.

Aurelie, who lives in the Morbihan department town of Calan, said she received a letter from the SPF during the first inquiry asking if she had lived in Calan during her pregnancy, only to never hear from them again.

"We have never been compensated, we never received anything like the families in Guidel, we got nothing, we were completely forgotten," said Aurelie, surprised that her family wasn't part of the cluster while living only 20 km [12 miles] away from Guidel.

"I wasn't the only one, it wasn't just Guidel in this case," Aurelie said.

The story of babies born without upper limbs came to the spotlight when an epidemiologist named Emmanuelle Amar, the director of the public Lyon-based Remera health registry, wrote a report alerting the Health Ministry of an alarming number of cases accumulating in specific rural areas back in 2014.

"In 2010, we warned the health authorities, we created a report in order to say one must pay attention to what is happening. And health authorities didn't understand the importance of it, at that moment, because the health authorities didn't have the personnel at their disposal who would have understood exactly what was happening," Amar said.

"It's one birth for every 10,000, and there, we have it at seven births among 6,000. So, truly, this is called an excess of cases. And we continued signalling the authorities who didn't want to listen to our call," explained Amar, who received a letter of dismissal last October from the parent body, the state-funded hospital Hospices Civils de Lyon (HCL) - citing insufficient state funds for the sustenance of Remera in the following year.

The letter was suspended though after in October Health Minister Agnes Buzyn ordered a fresh nationwide investigation into the matter to be conducted by SPF.

Interestingly, SPF is the same agency that had conducted the first inquiry and failed to establish the existence of an issue.

For former Environment Minister and MEP Corinne Lepage the French government has a habit of "sweeping the dust under the rug" despite the existence of a precedent for diseases linked to pesticides like the glyphosate and health scandals (BPA scandal) that rocked the French community in the past. "I thought that there was an issue. Because I knew the way the French administration works well. I know - how to explain this - the trouble of trying not to 'panic' the public," Lepage said. "Even in the area [of congenital malformation] I think there are more cases that haven't yet emerged, but I might be wrong, I don't know. I have a feeling," Lepage added.

According to SPF director Francois Bourdillon the agency has "come to regret" its inertia and will now "try to find answers" that could explain the probable causes behind the emergence of congenital malformation in Morbihan. "I believe it was important to go public because the aggregation of several cases has created a lot of stress to the community of Guidel," Bourdillon said.

Speaking about the possible causes, Bourdillon said "the exposure to drugs, the dietary habits -there are a lot of pesticides in the food- we look at the professional exposure, at the household products, the water quality," have been studied. "Probably it has to do with 'cocktail effects' probably at a certain moment children are more fragile and that leads to the development of an anomaly, a toxicity that results to congenital malformation."

According to the SPF director, there are "1,200 cases of reported congenital malformation in the region of Brittany," but the agency is still unable to identify the factors that have led to them.

"It could be environmental factors at the origin of these deformities," Amar said after pointing out that "the common points" between the families "were that they were all in a rural area."

The affected parents are still looking for answers. The meeting between SPF and the community of Morbihan Guidel appeased the spirits but made room for additional questions around the ability of the agency to identify a link between rural living and the apparition of the disease.

Returning from this meeting, Aurelie admitted feeling relieved, "as mothers we can see that it doesn't come from us and that makes us feel better."

However questions regarding the failure of the first study and the exclusion of families outside of Guidel remained unanswered.

"In Calan, we are surrounded by agriculture, fields, so we naturally wonder about the use of pesticides. Why doesn't it happen to people who live in the city centre?" Aurelie said. Aurelie's wish is just, she said, "to have answers. And now I'm thinking that if one day she asks me, I will know what to answer. I will know what to say and explain to her why she is like that. And for her, later, it will be good to understand where it comes from."

The French government is due to release a preliminary report on its current investigation on January the 31st .The report however is just expected to explain the methodolgy of the inquiry as well as the composition of the scientific commettee.

M/S Drone footage of coast, Brittany *NO SOUND AT SOURCE*

W/S Drone footage of coast *NO SOUND AT SOURCE*

W/S Drone footage of coast *NO SOUND AT SOURCE*

W/S Village of Calan

M/S Sign for village of Calan

W/S Rural area

W/S Cows at field

W/S Agricultural vehicles

W/S Calan

W/S Aurelie Bingler's house, Calan

M/S Aurelie Bingler

M/S Aurelie Bingler in kitchen

M/S Aurelie Bingler

M/S Photo of Lola riding a horse

C/U Photo of Lola riding a horse

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "In the beginning, she had normal reins [for horse-riding] so we would tie a knot on them and she would hold the reins in one hand. She was riding like a cowboy, with one hand and when she moved up to the next level, where she started to gallop, the current pony club where she goes to, made special reins for her, which was very nice. They adapted for her."

W/S Lola riding horse

M/S Lola riding horse

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "I could tell by his [gynaecologist] look. I could see him looking and checking. I could tell that something was wrong. I wasn't saying anything, I was just waiting. He didn't say it clearly but he eventually told me that he was a bit irritated. I told him to tell me. And he replied "I can't see her right hand". I asked him what he meant. He said: 'I can't see or find it' and then he added: 'I don't know if it is hidden or if it is not there at all.'"

C/U Photo of young Lola

M/S Aurelie Bingler showing photos of daughter Lola

C/U Photo of Lola

C/U Photo of Lola with prosthetic arm

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "[What I wish for] is just to have answers. She never really asked me, I have always told her that she was born this way that it was nature, it can happen, that some children are born with malformations. And now I'm thinking that if one day she asks me, I will know what to answer. I will know what to say and explain to her why she is like that. And for her, later, it will be good to understand where it comes from."

C/U Photo of Lola

C/U Photo of Lola

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "There are maybe several causes. But we are all in rural areas. In Calan, we are surrounded by agriculture, fields, so we naturally wonder about the use of pesticides. Why doesn't it happen to people who live in the city centre? I'm not saying that it needs to happen but they are probably less of them. There are not as many affected children in the city centre as there are in the countryside. We are so many, there must be a link to agriculture."

W/S Rural area

W/S Rural area

M/S Cows at field

W/S Guidel sign

M/S Guidel sign

W/S Guidel

W/S Guidel Town Hall

W/S Meeting with representatives of Sante Publique France (SPF), Guidel

W/S Meeting

M/S Parents of children with congenital deformities

W/S Sante Publique France representatives

M/S Parents of children with congenital deformities

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "Less than three years ago I received a letter from ARS [Regional Health Agency] asking me if I lived in the region of Calan when I was pregnant, because they have noticed that there have been many cases of children being born with the same malformation. Surprisingly, it has been three years since you posed your questions and we still have nothing."

SOT, Speaker (French): "It's us who sent you the letter."

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "Yes, that is why I am asking you, I wasn't the only one, it wasn't just Guidel in this case."

SOT, Speaker (French): "In fact you were not the only one to receive this letter, for us it was a way to cross-reference the problem and we didn't discover any leads in Guidel."

M/S Parents with children with congenital deformities

M/S Parents giving interview

M/S Parents giving interview

SOT, Father of child with congenital deformity (French): "They promised to keep us informed, which is already a lot for us, because we haven't been contacted [regarding the case] for about - our children are - three and half and seven years old and the inquiry started three years ago, so we haven't been contacted ever since."

M/S Aurelie Bingler with daughter Lola

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "My daughter was born on November 2011, she has a malformation on her right hand and we have never been compensated we never receive anything like the families in Guidel, we got nothing, we were completely forgotten."

M/S Aurelie Bingler giving interview *CUTAWAY*

SOT, Aurelie Bingler, Mother of Lola, girl missing forearm (French): "Having a response as to the reasons she was born like that, because it is true that we as mothers blame ourselves thinking that it may come from us or that we did something we shouldn't have done. And returning from this meeting, as mothers we can see that it doesn't come from us and that makes us feel better."

M/S Bingler with children

C/U Right-hand deformity

M/S Bingler with her children

W/S Calan

W/S Rural area

W/S Guidel

W/S Lyon

W/S Lyon

W/S Lyon

W/S Lyon

W/S Lyon

M/S Registrar for congenital deformities in Rhone-Alpes Emmanuelle Amar, Lyon

M/S Emmanuelle Amar

C/U Emmanuelle Amar

SOT, Emmanuelle Amar, Registrar for congenital deformities in Rhone-Alpes (France): "At the begining there was a doctor in a small village in Ain, in the department next to here, who called us to speak about some children who were born without arms. Two mothers had given birth to children without arms. That was shocking. We quickly made initial contact with these women and found out about a third one. Therefore, with three children born without arms, in 2010, we warned the health authorities, we created a report in order to say, one must pay attention to what is happening. And health authorities didn't understand the importance of it, at that moment, because the health authorities didn't have the personnel at their disposal who would have understood exactly what was happening. Therefore, we asked to survey this department, that is to say, to collect all the data from all the hospitals, all the maternity clinics and paediatric services."

C/U Newspapers

SOT, Emmanuelle Amar, Registrar for congenital deformities in Rhone-Alpes (France): "On the seventh case, so we had seven babies who were born with deformities that are very rare, that's to say that the arms aren't developed in the mother's womb. And the arms not being developed is in a very precise period of embryonic development. It's according to each child whether their arm is cut off there, there or there. And they are always missing their hands. It's one birth for every 10,000, and there, we have it at seven births among 6,000. So, truly, this is called an excess of cases. And we continued signalling the authorities who didn't want to listen to our call."

C/U Emmanuelle Amar

SOT, Emmanuelle Amar, Registrar for congenital deformities in Rhone-Alpes (France): "The common points were that they were all in a rural area, a very rural area. They didn't have a profession in common, certain [mothers] ate organic food and others not, some drank water from the tap, others from bottles, so there wasn't a common point other than the fact that they're all living in the countryside."

C/U Binder labelled 'Cluster Ain'

SOT, Emmanuelle Amar, Registrar for congenital deformities in Rhone-Alpes (France): "But it could be environmental factors at the origin of these deformities."

M/S Emmanuelle Amar

W/S Arc de Triomphe, Paris

M/S Paris street

M/S Building

M/S Former Environment Minister and Former MEP Corinne Lepage

SOT, Corinne Lepage, Former Environment Minister and Former MEP (French): "When I heard about the alert that Ms. Amar [Emmanuelle] made and the way in which the public health sector of France reacted to this alert, I thought that there was an issue. Due to the fact that I knew the way the French administration works well and I know - how to explain this - the trouble of trying not to 'panic' the public, and knowing that there is a tendency of sweeping the dust under the rug."

C/U Insignia of 'Huglo Lepage' law office

SOT, Corinne Lepage, Former Environment Minister and Former MEP (French): "I think there is fear of discovering the causes that could endanger a number of economic interests."

M/S Lepage *CUTAWAY*

C/U Lepage's hands *CUTAWAY*

SOT, Corinne Lepage, Former Environment Minister and Former MEP (French): "The minimum would be to try to explain the cases we know of and search and make sure that there are no other ones."

W/S Street

SOT, Corinne Lepage, Former Environment Minister and Former MEP (French): "Even in the area [of congenital malformation] I think there are more cases that haven't yet emerged, but I might be wrong, I don't know. I have a feeling."

W/S Paris

M/S Guidel Town Hall

M/S Francois Bourdillon, General Director of Sante Publique France

SOT, Francois Bourdillon, General Director of French national public health agency [Sante publique France] (French): "I believe it was important to go public because the aggregation of several cases has created a lot of stress to the community of Guidel."

M/S Bourdillon giving interview *CUTAWAY*

C/U Camera screen *CUTAWAY*

SOT, Francois Bourdillon, General Director of French national public health agency [Sante publique France] (French): "We are studying the congenital malformation, I am reminding you that there have been 1,200 cases of reported congenital malformation in the region of Brittany, the number of the disease is notable and unfortunately we still haven't found factors explaining the entire spectrum of the disease in France."

M/S Bourdillon speaking at meeting

W/S Bourdillon speaking at meeting

SOT, Francois Bourdillon, General Director of French national public health agency [Sante publique France] (French): "We don't exclude anything when we work on the explanatory factors. We've studied the exposure to drugs, the dietary habits -there are a lot of pesticides in the food- we look at the professional exposure, at the household products, the water quality. We have to look for answers, probably it has to do with 'cocktail effects' probably at a certain moment children are more fragile and that leads to the development of an anomaly, a toxicity that results to congenital malformation."

W/S Rural area

W/S Rural area

W/S Rural area

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