“Preventing families from wandering around medically”: Aveyron, pioneer of a new system for premature babies

Née prématurée, Lise a aujourd’hui deux ans. Et comme 149 autres enfants du département, elle a pu bénéficier d’un parcours de soins adaptés. Centre Presse – Philippe Henry

The first child to benefit from an adapted care pathway is just two years old and is from Aveyron. Set up in September 2022, the Cocon pathway (early and coordinated care for vulnerable newborns) which was extended, as an experiment, to the whole of Occitanie but also to Paca and Nouvelle-Aquitaine must be stopped in 2027. For pediatrician Jean-Claude Semet, it must continue so that premature babies can benefit from better care.

The hours of anguish that immediately followed the birth could have been even more difficult without the support of the medical teams at the Jacques-Puel hospital in Rodez and also those at the Toulouse University Hospital. Born on July 28, 2022, at six and a half months, little Lise was able to blow out her first two candles, in perfect health despite this episode “which was obviously difficult to live through”.

We remember receiving a photo of our little girl, on board the plane

For her parents, Jonathan and Nelly “the hardest part was letting her go, as soon as she got out, with a team from the Toulouse hospital, by helicopter. We remember receiving a photo of our little girl, on board the plane and sent by the doctors, to reassure us. We were really well looked after”.

For two weeks, Lise will stay in Toulouse. And another two weeks of hospitalization, in Rodez this time, will also be necessary. Like other children, Lise benefited from the rapid implementation of the Cocon system (early and coordinated care for vulnerable newborns), launched in September 2022.

Quality of care

The first child to enter this program will therefore have been this little girl from Aveyron. “This pathway aims to alleviate the difficulties observed in monitoring children at risk and to prevent probable neurodevelopmental disorders of which neonatal vulnerability is a major provider”, explains Dr. Jean-Claude Semet, pediatrician, former head of the pediatrics and neonatology department in Rodez, and head of the Cocon pathway.

Because, “in view of existing research on a population that has not benefited from early and coordinated care, 40% of premature children will have developmental disorders. And many families can find themselves wandering medically”, adds the practitioner.

Cocon has multiple objectives: to identify early signs of developmental disorders, thanks to dedicated consultations, to propose, in agreement with the parents, an adapted care pathway and to set up individualized support in collaboration with all the health professionals concerned and to help coordinate care.

A system that could end in 2027

But, launched as an experiment, this system must be stopped in 2027. “However, the gains on the development of the child are indisputable. And this system should continue and be generalized, enter into the general social security system, so that all the little ones who are born in France, in these very difficult conditions, can benefit from this quality care. It is not an additional system but a network adaptable to the constraints and specificities of this type of monitoring”, argues Dr. Jean-Claude Semet.

“Indeed, we met wonderful caregivers, remember Nelly and Jonathan. Lise has benefited from physiotherapy care at regular intervals, by a wonderful practitioner. Everything has been done to ensure that she has as few after-effects as possible, and it would be a shame if this system were to stop. It must also be said that our family has been very supportive. And today, everything is going very well.”

Regular monitoring, which will become more spaced out over the years, will nevertheless always be provided and offered. Today, surrounded by her family, Lise plays, enjoys her parents as a child of her age does most naturally in the world, happy to be able to flourish like other children, despite this premature birth.

In figures

149, the number of babies in Aveyron who have benefited from this monitoring and who have been able to be cared for as part of this experimentation.

13,000 children could be affected by this experimentation, and by the care pathway called Cocon (early and coordinated care for vulnerable newborns), in the three regions.

4,759 newborns have already been integrated into the pathway. 55,000 children per year in France are born prematurely, of which 2,750 are very premature (24 to 28 weeks) and 8,250 are considered very premature (28 to 32 weeks).

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