A mom and dad have opened up about why their little boy gets to celebrate two birthdays, after an extremely rare developmental condition nearly took his life before he was even born.
Keishera and Greg Joubert were devastated midway through pregnancy when they learned that, at around five months, their unborn son’s airway hadn’t formed correctly. Doctors told them it was linked to a disorder seen in roughly one out of every 50,000 pregnancies.
The condition, Congenital High Airway Obstruction Syndrome (CHAOS), is typically detected after 16 weeks of pregnancy. Tragically, many babies diagnosed with it don’t survive, either before birth or in the months that follow.
In the Jouberts’ case, specialists developed an extraordinary plan: a groundbreaking approach that meant their son would, in a sense, enter the world twice—resulting in two separate “birth” days.
Speaking to ABC, Keishera explained how the treatment placed her in an almost unheard-of situation: “Not a lot of women get to have a C-section but they’re still pregnant after.”
Her doctor, Dr. Emanuel Vlastos, proposed an intervention designed to briefly bring the baby into the outside world so surgeons could address the blockage—before returning him to the uterus to keep growing.
Nationwide Children’s Hospital describes CHAOS as a dangerous chain reaction in the womb: “A blockage in the fetal airway makes fluid go back into the lungs, trapping it. This makes the lungs get very large and puts pressure on the baby’s diaphragm and heart.
“The pressure makes it hard for the heart work and can lead to congestive heart failure.”
Dr Vlastos—who also leads the Orlando Health Women’s Institute Fetal Care Center at Winnie Palmer Hospital—said the obstruction can cause babies’ lungs to expand and tighten, increasing strain on the heart and the rest of the cardiovascular system.
“It begins to squeeze the baby’s heart. Most of these babies die,” she added.
An earlier attempt to resolve the obstruction using a standard procedure didn’t work. Greg described how uncertain things felt at that stage: “We had about, I’d say, conservative to 20-25% chance of positive outlook before our first surgery,” dad Greg shared.
With time running short and options narrowing, Vlastos devised a new plan: deliver the fetus via cesarean at 25 weeks, keeping him attached via the umbilical cord while the team worked.
The approach involved partially removing the baby—his head and upper torso—from the amniotic sac so a tube could be placed in his airway to bypass the obstruction. Vlastos said: “The placement of the ‘cannula’ below the obstruction had not been done, to my knowledge, before, with the exposure of Cassian’s head and neck.
“Then, we replaced the baby back into the uterus, and we closed the uterus, and mom stayed in the hospital until delivery.”
Keishera said doctors even captured a photograph during the procedure, showing 25-week-old Cassian with his head and neck outside her womb—something she described as a “little glimpse of the future.”
Once Cassian was returned to the uterus with the cannula in place, Keishera remained in hospital so clinicians could closely track both her health and the baby’s progress.
Then, at 31 weeks, her water broke—meaning it was time for Cassian to be delivered again.
Even with that milestone reached, the family’s journey wasn’t over. Cassian required a further 132 days in neonatal intensive care before he was finally well enough to go home.
Keishera told ABC: “What greater triumph was it then that we could finally take our baby home?”
Although the unprecedented surgery succeeded, Cassian still faces ongoing challenges related to CHAOS. He needs a ventilator and a feeding tube daily, and his parents have been told he will need two additional surgeries in the future.
Reflecting on how close they came to losing him, Greg said: “We were ready to say goodbye, but we said hello,” dad Greg added, equally relieved.
Because Cassian’s fight began before he ever officially arrived, his parents are determined to honour both life-changing dates.
Keishera explained their plans: “We’re planning just a small party for his first birthday, [the] anniversary of his surgery that saved his life, and then, of course, for his ‘birth’ birthday, we’re going to have another birthday bash for him there to celebrate a whole year.”