ROCHEFORT, France – A devastating diagnosis at five months pregnant in 2023 sent Jessica and Lahcene, residents of Rochefort, reeling: their son, Naël, had a diaphragmatic hernia, a condition with a stark 50% fatality rate.
This is the story of Naël, a tiny warrior born with a rare condition, and his family’s fight for his life.
- Naël was born with a diaphragmatic hernia, a rare malformation affecting about 300 French babies annually.
- His parents faced grim prognoses and multiple surgeries for Naël, who spent months hospitalized.
- Despite ongoing health challenges, Naël is now a smiling toddler, though he must avoid community settings until age 3.
- His mother shares their journey online to raise awareness and offer hope to other families.
Fast forward to August 2025, Naël, at 19 months old, is a ray of sunshine. With curly hair and a smile that lights up the kitchen, he’s learning to talk, often sharing “I love you.” But beneath the charm is a small body that weighs just 9 kilograms (about 20 pounds) and bears the physical map of his battle: significant scars, including a large one on his abdomen.
Today, Naël is a solar child whose health remains fragile, always subject to hypertension, with bimonthly controls in the hospital. He will not be able to live in community until the age of 3, to limit the risk of infection or viruses.
J. B.
Naël is one of about 300 French babies born each year with diaphragmatic hernia. This rare malformation occurs when the diaphragm doesn’t fully form, allowing abdominal organs to move into the chest cavity. This can crowd the developing lungs, shrinking one to the size of a cherry, and even shift the heart.
A Life on Hold
Jessica, already mom to Shaya, 18, and Noam, 9, was navigating her third pregnancy when the diagnosis hit in September 2023. “It changes everything,” she recalled. “We cried, we wondered. When you try to find information on diaphragmatic hernia, you don’t find much.” The endless consultations with specialists in La Rochelle, Poitiers, and Paris painted a grim picture, filled with unfamiliar medical terms and a dire prognosis.
Jessica felt reduced to an incubator. “They told me, ‘As long as the baby is inside, everything is fine, but after birth, nothing is guaranteed.’ It felt like we were being told we could just end it,” she said, her voice tight with emotion.
The parents refused to consider a medical termination, unwilling to live with what-ifs. But their lives screeched to a halt. “We weren’t planning anything – not the room, not even a first name. I worried, thinking I had done something wrong,” Jessica admitted. She credits her sister Laura, her resilient older children, and a supportive online community of parents facing the same challenges for their strength.
Grim Forecasts
In December 2023, at seven months pregnant, Jessica’s water broke. She was hospitalized for six weeks in Bordeaux before Naël’s birth in January 2024. “Prematurity, plus the hernia, meant I had to deliver at a Level 3 maternity ward, equipped with a resuscitation service,” she explained. Naël was delivered via C-section under a red code. Typically, babies with this condition don’t cry at birth, but Naël managed two small cries. “He never does anything like everyone else,” Jessica smiled. Resuscitation nurses later told the family that the initial prognoses had been “quite grim,” doubting Naël would even reach the pediatric intensive care unit. Two days later, Naël underwent surgery to reposition his organs and repair the diaphragmatic defect.
Naël’s dad, Lahcene, and his big brother Noam, here at the Pellegrin hospital center in Bordeaux after the first operation.
J. B.
“We joke about our children in kit, our Ikea children, to keep anxieties away.”
Naël’s hospital stay stretched for nearly six months. During this time, he battled multiple infections and required further procedures. The family found solace in the compassionate care they received. “Some caregivers, I consider them family,” Jessica shared. “They involved us in his care, giving us a sense of parental control.” Staying at the Ronald McDonald House provided a semblance of normalcy. Jessica found solidarity with other parents facing similar battles, whether it was pediatric cancer or complex surgeries. They bonded over dark humor, calling their children “IKEA children” to cope with the immense stress. While there were moments of joy, the harsh reality of losing other children cast a long shadow; Jessica witnessed 30 child deaths during those six months.
Today, Naël is a bright, energetic child. However, his health remains fragile, requiring constant monitoring for hypertension and bimonthly hospital check-ups. Hospital routines still interrupt his sleep. He won’t be able to join community settings like daycare until he’s 3, to minimize infection risks. Jessica remains home to care for him, grateful for her partner’s unwavering support.
Jessica is determined to shed light on diaphragmatic hernia and change perceptions of children with serious illnesses. She hopes to offer hope and practical advice to expectant parents through her Instagram account, nael_l_hernie_cœur. “Even when the statistics look bad,” she stated, “sometimes, not always, it turns out okay.”
