2023-09-02 16:00:15
We imagine this good-natured giant, leaning over one of his little patients. Attentive to the slightest sign of his illness, attentive to his capacities for exchange, even those that are tenuous. “When a child has permanent brain damage that cannot be compensated, he will never have the performance of a healthy adult”observes Olivier Dulac, in a soft and calm voice.
There are two ways to approach the situation, continues this specialist in childhood epilepsy, in the portrait dedicated to him by filmmaker Nils Tavernier, in the documentary series Square Artiste (Arte, 2019). “Either we say to ourselves ‘this child has difficulties, but he has potential that we will give ourselves the means to develop, and we will love him as a different individual’, or we ask him more than ‘he can’t do’a dead end that “will constantly confront him with his failure”.
Mane and beard of snow, the 77-year-old doctor, now retired, publishes a book, Epilepsies and brain development (Odile Jacob, 288 pages, 24.90 euros), with the eloquent subtitle: “Forgotten children, lost parents”. He retraces the last five decades of progress in the diagnosis and management of these diseases, progress that he has accompanied and supported. A gripping, often poignant story, intertwined with many stories of young patients.
Clear the maquis « unfathomable » these infantile epilepsies: such was his priesthood, first at the Saint-Vincent-de-Paul hospital and then at the Necker-Enfants Malades hospital (AP-HP), in Paris. In the early 1970s, he recalls, doctors ignored these fearsome diseases. “Professor Dulac was one of the first to take an interest in it.says Mathieu Milh, neuropediatrician at the Timone hospital (AP-HM), in Marseille. And to defend the idea that the crises of toddlers should be analyzed with the same rigor as those of older children or adults. »
“Importance of Brain Maturation”
Crises, these “hold-ups that seize the person”, according to Olivier Dulac, are often only a symptom of severe pathologies, linked to malformation, trauma, stroke, brain development abnormality, gene mutation… In France, 400 to 500 new patients from under 15 are affected each year, i.e. at least 10,000 children. Many gradually lose their communication skills, developing intellectual and motor disabilities.
“There is such a diversity of pathologies, notes the neuropediatrician. We know perhaps 500, or no more than 10% of the whole. » In the 1990s, this pioneer had to fight hard to have his avant-garde ideas accepted. “Previously, neurologists treated these children as if they were little adults, without taking into account the effect of age, says Svetlana Gataullina, neuropediatrician at Antoine-Béclère hospital (AP-HP), in Clamart (Hauts-de-Seine). Olivier Dulac reversed this vision by showing the importance of cerebral maturation in the appearance – and sometimes the disappearance – of these diseases. »
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