Parents of baby boy who was 'born twice' speak out

The parents of a baby boy who was "born twice" are speaking out and sharing his remarkable story ahead of his first birthday.

"Not a lot of women get to have a C-section but they're still pregnant after," mom Keishera Joubert told ABC News of her son Cassian's birth story.

Cassian, now 8 months, was diagnosed by doctors with congenital high airway obstruction syndrome, also referred to as CHAOS, 19 weeks into Joubert's pregnancy.

According to the National Organization for Rare Disorders, congenital high airway obstruction syndrome is a rare condition characterized by a blockage of the airway, which causes fluid to become trapped in a fetus's lungs.

Dr. Emanuel Vlastos, director of the Orlando Health Women's Institute Fetal Care Center at Winnie Palmer Hospital for Women and Babies, was one of Cassian's doctors and said the condition is rare and can be fatal.

"[In babies with congenital high airway obstruction syndrome], their lungs get bigger, tighter, [and there is] more pressure. It begins to squeeze the baby's heart. Most of these babies die," Vlastos said.

For Joubert and her husband Greg, the news about their second child was devastating.

"No one ever wants to hear that this baby has a very real chance of dying in the womb, not even making it to birth," Keishera Joubert said.

Keishera Joubert said she initially underwent a procedure to address Cassian's condition, but it proved unsuccessful.

"We had about, I'd say, conservative to 20-25% chance of positive outlook before our first surgery," Greg Joubert recounted.

Vlastos then proposed another surgery to the Jouberts, one that would be groundbreaking and which they went ahead with. The extraordinary alternative would mean Cassian would be out of the womb not once, but twice, if successful.

At 25 weeks, 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.

"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," Vlastos explained. "Then, we replaced the baby back into the uterus, and we closed the uterus, and mom stayed in the hospital until delivery."

During that surgery, doctors even had a chance to take a photo of Cassian.

"It was a little … glimpse of the future," said Keishera Joubert. "It was a glimpse of a little baby boy that I would eventually take home from the hospital."

Keishera Joubert said she stayed in the hospital, and at 31 weeks, her water broke and doctors carefully delivered Cassian.

Cassian received treatment during his 132-day stay in the NICU and is now home with his family. He currently uses a ventilator and a feeding tube and faces at least two more surgeries, but the family says they're grateful for the miracle that got him this far.

"What greater triumph was it then that we could finally take our baby home?" Keishera Joubert said.

"We were ready to say goodbye, but we said hello," Greg Joubert added.

The Jouberts said they are now preparing to celebrate Cassian not once, but twice for his upcoming first birthday.

"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," said Keishera Joubert.