Charente-Maritime: Despite poor prognosis, their baby with diaphragmatic hernia is living almost normally

A Rochefort family wants to share their story about their fight against a rare disease that only affects 300 families a year in France.

After five months of pregnancy, in 2023, Jessica and Lahcene, residents of Rochefort, learned that their future son Naël had a diaphragmatic hernia. They wanted to share their chaotic journey through this fatal disease in half of cases. In August 2025, at 19 months old, Naël was a smiling little boy with light, curly hair who was beginning to speak and say "I love you" to everyone they met in the kitchen. A lot of love and patience preceded his return home. He now plays like a normal child, except that he weighs only 9 kilos, a featherweight for his age, and his frail body already bears many scars, including a large one on his abdomen.

Naël is one of the 300 French babies born each year with a diaphragmatic hernia, a rare malformation of the diaphragm which, during pregnancy, allows the digestive system to take up too much space in the chest, prevents a lung from developing, reducing it to the size of a cherry, and also shifts Naël's heart to the right.

Already the mother of Shayna, 18, and Noam, 9, Jessica is coping very well with this ^third pregnancy. After several ultrasounds in the second trimester, the diagnosis was made in September 2023. "It changes everything, we cry, we wonder, when we try to find information on diaphragmatic hernia, we don't find much," explains Jessica, a recruitment manager and Rochefort city councilor. The numerous tests, the trips back and forth to specialists between La Rochelle, Poitiers, Paris, Naël's parents are faced with figures, terms and a very unfavorable life prognosis.

"I was considered an incubator. They told me: 'As long as the baby is inside, everything is fine, but after delivery, nothing is guaranteed.' On the contrary, we think we can cause death," Jessica insists.

The parents don't want to consider medical termination of the pregnancy—"we didn't want to live with regrets"—but their lives are on hold. "We're not planning anything, not the bedroom, not even a name. I worry, we tell ourselves I did it wrong," confides Jessica. The mother praises the unwavering support of her sister Laura, the resilience of her two other children, and the solidarity of the parents discovered online as victims of the same illness.

Hospitalized in December 2023 as an emergency unit at the Pellegrin hospital group, after her waters broke, at seven months of pregnancy, Jessica spent six weeks in care in Bordeaux, before the birth of her son in January 2024. "The prematurity, plus the hernia, meant I had to give birth in a level 3 maternity ward, meaning one equipped with an intensive care unit." Naël was born by code red caesarean section. Normally, a baby with such a hernia doesn't cry at birth, but Naël let out two little cries. "He never does anything like everyone else," Jessica smiles. Intensive care nurses would later confide to the family that the prognosis, again, was "pretty disgusting," as they doubted he would make it to the pediatric intensive care unit. Naël would be operated on two days later to put his organs back in place and close the hole in his diaphragm.

“We joke about our kit children, our Ikea children, to keep the anxieties at bay.”

During nearly six months of hospitalization, where Naël could not be fed normally, he developed several infections and underwent further surgery. His family was able to rely on quality caregivers. "Some of them, I consider them members of my family; they gave me a role as a parent by involving us in the care. We experienced those months in the hospital, staying in the Ronald McDonald House, an incredible opportunity to have a semblance of a normal life," emphasizes Jessica, who has worked with other parents of hospitalized children. "We're all in the same boat, whether it's dealing with pediatric cancer or major surgeries. We joke about our children in kits, our Ikea children, to keep the anxieties at bay. There were moments of happiness but also quite the opposite. There, in six months, I experienced 30 child deaths."

Today, Naël is a sunny child whose health remains fragile, still prone to hypertension, with bimonthly check-ups at the hospital. He wakes up in the middle of the night, still stuck to the hospital's care schedule. He won't experience the joys of community life until he's 3. Jessica therefore stays at home to raise him, "fortunately I'm not alone, I can count on my partner."

She wants to make this disease more visible, change the way people look at sick children, and above all, give hope and communicate with future parents, hence her Instagram account nael_l_hernie_cœur . "Even when the numbers are bad, sometimes, not all the time of course, things go well."