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Parents search for answers over babies born without arms in France

Loic Venance, AFP | A mother holds her newborn baby at the hospital in Nantes on July 7, 2018.

Parents, health professionals and advocacy groups met in Paris for a first time on Thursday as part of a new committee to discuss mysteriously high rates of congenital birth defects in three areas of France.

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The French health ministry formed the committee earlier this month in response to growing alarm over increased numbers of newborns with a rare defect known as upper limb reduction, which occurs when a part of or the entire arm of a baby does not form completely in utero.

A separate panel of scientific experts has also been convened to “identify and analyse” the potential causes of the condition, which so far remain a mystery. It will meet for the first time in early March.

France 2 television aired a report in September on the unusually high rates of upper limb reduction in the eastern Rhônes-Alpes region between 2009 and 2017. At least seven babies were born with the defect during this period in the tiny rural area of Ain, according to a 2014 study by REMERA, an organisation tasked by the national health agency (Santé Publique France or SPF) with monitoring congenital disorders in the region.

With fewer than 150 cases reported nationwide each year, the number appeared disproportionately high.

The story quickly garnered widespread public attention, prompting the SPF to announce on October 4 that it had launched an investigation into the situation in Ain.

Inquiries were also launched into the Morbihan and Nantes areas of Western France. In Morbihan, four women were reported to have given birth to babies with upper limb reduction defects between 2011 and 2013, while three cases had been identified in Nantes between 2007 and 2008.

While the SPF confirmed the elevated number of cases in Morbihan and Nantes, it did not reach the same conclusion in Ain, where it said the statistics do not show an excess of cases in comparison with the national average”.

It added that no apparent cause could be found for the defects, despite extensive interviews with the affected families.

‘We warned them for years’

REMERA disputed the SPF’s assessment of the situation in Ain,saying it was flat-out wrong.

“They had to cover for years and years of silence. We warned them for years that there was an abnormal phenomenon that needed to be investigated … And the SPF never responded,” Emmanuelle Amar, director of REMERA, told FRANCE 24 while en route to Thursday’s committee meeting.

“When the [scandal] erupted in October 2018, they preferred to say that there was a difference of scientific opinion.”

The SPF reversed its initial stance on Ain in late October, following the discovery of 11 additional incidents of congenital disorders in the area. The agency also announced a new nationwide investigation into the issue. Amar told FRANCE 24, however, that these new cases were unrelated.

“These children, who are all older now, were born with defects, but not upper limb reduction. They had different deformities, of the kidneys or feet for example. They have nothing to do with each other.”

Yet with so many questions still left unanswered, many of the families of children born with upper limb reduction have been left frustrated by how the issue has been handled.

“The main reaction is disappointment,” Amar said, adding that she was attending Thursday’s meeting with a mother who had come to demand an explanation. “These women are angry. If we had taken preventative measures from the start, they wouldn’t have the feeling that they had been abandoned.”

Amar said because the SPF took so long to recognise the problem in Ain, the agency was unable to coordinate an effective response.

“If we could have informed all the obstetricians in the region of the problem, they could have done in-depth screening,” she said. “When they noticed that a hand was missing, they could have taken amniotic fluid and meconium samples from the baby, and hair samples from the mother at birth, to test for xenobiotics to gain a better understanding of what they might have been exposed to.

Several hypotheses have been floated as to a possible cause for the defects in all three regions – such as the use of pesticides at nearby farms – but nothing has been proven so far.

The ministry of health, however, hopes to shed some light on the mystery by June 30, when it expects its panel of scientific experts to report their findings.

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