Parents of baby boy 'born twice' explain 'triumph' after fearing for his life
William Morgan
Featured Image Credit: YouTube/GMA
A mom and dad have shared why they are celebrating two birthdays for their baby boy after an incredibly rare developmental disease almost claimed his life before it had even begun.
Keishera and Greg Joubert had to go through the unimaginable when they were told at five months that their unborn son's airways had not developed properly, as the result of a health condition that affects only one in 50,000 pregnancies.
Most babies who are identified as having Congenital High Airway Obstruction Syndrome (CHAOS) sadly die from the condition, either in the womb or in the months after birth, with the disease only detectable after the 16th week of pregnancy.
But doctors devised an ingenious solution to the couple's unborn son's defect, with a world first procedure that resulted in their son technically having two 'birth' days and involved delivering him twice.
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Speaking to ABC, Keishera shared how the treatment for her son's CHAOS put her in a unique position, saying: "Not a lot of women get to have a C-section but they're still pregnant after."
That's because her physician, Dr. Emanuel Vlastos, decided on a pioneering intervention that involved introducing Joubert's baby to the outside world so that he could have a corrective surgery. Then they stuck him back inside so he could continue developing.
According to the Nationwide Children's Hospital, the rare condition that could have killed her baby, later named Cassian, is caused by: "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 runs the Orlando Health Women's Institute Fetal Care Center at Winnie Palmer Hospital, explained how babies with the condition will see their 'lungs get bigger, tighter' due to the obstruction, which puts more pressure on their cardiovascular system.
"It begins to squeeze the baby's heart. Most of these babies die," she added.
Dr Vlastos' first attempt to fix the obstruction with a routine procedure was unsuccessful. "We had about, I'd say, conservative to 20-25% chance of positive outlook before our first surgery," dad Greg shared.
With few options left to correct the issue in Cassian's upper airway, Vlastos came up with a novel solution that would involve delivering the premature fetus by cesarean section at 25 weeks.
Then, with his head and upper torso cut out of the amniotic sac, the doctor and her team planned to fit a tube temporarily in his airway. Vlastos explained: "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."
Mom Keishera shared how the doctors were even able to take a photo of 25-week-old Cassian as his head and neck hung out of her womb, which she said was a 'little glimpse of the future'.
After premature Cassian was safely returned to her womb with his cannula attached, Keishera was kept in hospital until delivery so that medics could monitor mom and baby's progress.
Eventually, at 31 weeks, her water broke, and it was time to give birth to Cassian all over again.
Although this was great news to his expectant parents, their baby would need to spend another 132 days in neonatal intensive care before he could be taken home.
A relieved Keishera told ABC: "What greater triumph was it then that we could finally take our baby home?"
But even though his pioneering surgery went well, thanks to his rare CHAOS condition, Cassian still requires a ventilator and feeding tube every day and will need two further surgeries to correct the issue further down the line.
"We were ready to say goodbye, but we said hello," dad Greg added, equally relieved.
With Cassian going through his extraordinary health journey before he had even been born, his grateful parents are only too happy to throw him two birthdays. After all, he was actually born twice.
The now mom-of-two said: "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."