In a story that truly defies the odds, baby Cassian Joubert has become a medical marvel. Diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS), a rare and often fatal condition, Cassian’s life hung in the balance. But thanks to the incredible skill and innovative spirit of doctors at Orlando Health Winnie Palmer Hospital for Women & Babies, he was given a fighting chance – a chance that involved being born not once, but twice.
Facing a Devastating Diagnosis
CHAOS syndrome, affecting an estimated 1 in 50,000 to 100,000 births, occurs when a thick membrane obstructs a fetus’s upper airway. For Cassian, this meant a blockage just below his vocal cords. Parents Keishera and Greg Joubert faced devastating news, with medical literature describing the condition as “devastatingly fatal.” Despite the grim prognosis, a few documented survivor stories offered a fragile glimmer of hope.
Keishera underwent a laparoscopic surgery at 22 weeks pregnant to try and remove the obstruction, but the membrane proved too thick. The family was left heartbroken and uncertain about their next steps.
A Groundbreaking ‘Born Twice’ Procedure
Dr. Emanuel Vlastos proposed a high-risk, innovative solution: a “born twice” procedure. At 25 weeks gestation, Cassian was partially delivered via C-section. His head and arms were brought into the world, while the rest of his body remained connected to the placenta. This allowed specialists to perform a tracheostomy, creating a safe airway before the delivery was completed.
Keishera described the profound moment of seeing her son partially born, feeling air on his face for the first time. After the procedure, Cassian was returned to the womb, and Keishera remained hospitalized for the remainder of her pregnancy. A subsequent surgery at 31 weeks, after Keishera’s water broke unexpectedly, involved replacing the tracheostomy tube with one suitable for life outside the womb, with a ventilator and feeding tube taking over vital functions.
Hope for the Future
Today, Cassian is finally home with his family. While he still faces at least three more surgeries before turning two, doctors are optimistic about removing the membrane that currently requires ventilator support. Keishera shared, “Some days it does feel like we’re waiting for the other shoe to drop… Cassian is like a box of chocolates. You never know what you’re going to get.” Proud dad Greg added, “We’re not through it yet, but honestly, aren’t we all, like, in need of a good story?” Cassian’s journey is a powerful testament to medical innovation and the resilience of the human spirit.
What inspires you most about Cassian’s incredible survival story? Share your thoughts in the comments below!