When you are 19 weeks pregnant and your doctor tells you your baby might not survive birth, you do not process it right away. Keishera Joubert listened as doctors explained that her second son had a condition so rare it barely shows up in medical textbooks.
A thick membrane was blocking his airway. Fluid was trapped in his lungs. His lungs were getting bigger and tighter, putting pressure on his heart. Most babies with this condition die.
Cassian had been diagnosed with congenital high airway obstruction syndrome, referred to as CHAOS, a rare condition characterized by a blockage of the airway, which causes fluid to become trapped in a fetus's lungs. The statistics were brutal. One in every 50,000 to 100,000 births. Usually fatal.
"I immediately just closed my laptop, and I went straight into the bedroom, into a corner, just started crying," Keishera told media, remembering that moment.
A first surgery that was not enough
At 22 weeks, doctors tried to fix the problem. They performed laparoscopic surgery to cut through the membrane blocking Cassian's airway. It did not work. The membrane was too thick. Greg Joubert, Cassian's father, remembered: "We had about, I would say, conservative to say 20 to 25 percent chance of positive outlook before our first surgery." But then Dr. Emanuel Vlastos proposed something that had never been done before. Something that sounds impossible when you first hear it. He wanted to deliver Cassian partially, pull his head and neck out through a C-section incision, leave the rest of his body still connected to the placenta, and perform an emergency tracheostomy while the baby was still in the womb. Then put him back inside his mother's body to keep developing.
The surgery that changed everything
At 25 weeks, they did it. Vlastos partially delivered Cassian by making an incision through the abdomen and uterus, like a cesarean section, with his head and neck outside of the womb but still connected to the placenta, as a medical team worked to place a temporary tube in his airway.
It worked. Cassian's airway was secured. And Keishera got something unexpected from the experience. Dr. Vlastos showed her a photo of Cassian during the surgery. "It was a little glimpse of the future," she said. "It was a glimpse of a little baby boy that I would eventually take home from the hospital."
She saw her son's face at 25 weeks. His eyes. His eyebrows. The tiny tube in his throat. All before he was technically born. All because a surgeon in Orlando took a massive risk on a procedure no one had done before.
Born again, six weeks later
At 31 weeks, Joubert's water broke, and Cassian came back into the world. After 132 days in the neonatal intensive care unit, he was ready to go home. More than 30 nurses and doctors coordinated to replace the temporary tracheostomy with one that would work outside the womb. A ventilator and feeding tube took over where the placenta had been doing the work.
Now he is home. He is eight months old. He is still on respiratory support. He still faces at least two more surgeries before he turns two to address that thick membrane that started this whole journey.
Two birthdays to celebrate
The family is preparing to celebrate Cassian's upcoming first birthday with a small party for the anniversary of the surgery that saved his life. Then they are planning another celebration for his actual birth day. Because Cassian does not just have one birthday. He has two. One when his head came out into the world at 25 weeks. One when the rest of him followed at 31 weeks.
"Not a lot of women get to have a C-section, but they are still pregnant after," Keishera said. It is a strange way to describe a miracle.
