UW Medicine saves baby boy’s life with rare procedure

Baby Oliver’s life, who has a rare genetic condition called Pierre Robine sequence, was saved at birth by a team of 30 medical professionals.

SEATTLE — Every breath that baby Oliver takes is a gift. It’s something his parents Lauren Sanford and Josh Setten will never take for granted considering how Oliver came into the world.

When Sanford was 18 weeks pregnant, the couple learned their baby had Pierre Robine sequence, a rare congenital birth condition that involves an underdeveloped jaw and cleft palate. Because of his tiny jaw, his tongue, which was developing normally, was blocking his airway and it would be nearly impossible for him to breathe after he was born.

So, doctors at UW Medical Center recommended a rare procedure called Ex Utero Intrapartum Treatment, or EXIT, which would allow doctors to establish an airway for Oliver in the middle of his birth.

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“It was around, I think 32 or 33 weeks when we found out that I was having the EXIT procedure, and it was shocking, for sure, because the way they described it, it’s hard to wrap your head around what they were actually going to do,” said Sanford.

On Nov. 16, a team of 30 surgeons, nurses and specialists from UW Medicine and Seattle Children’s Hospital paused Oliver’s delivery via cesarean. While he was still connected to Sanford’s placenta and receiving blood and oxygen, doctors intubated Oliver through his nose.

“We tested to see if we can intubate baby Oliver through the mouth, which we didn’t think was going to be possible,” said Dr. Jake Dahl, pediatric otolaryngologist at Seattle Children’s. “So, then our plan was to pivot towards using a fiber-optic camera with a breathing tube over that placing it through his nose into the airway.”

After seven minutes, doctors were successful.

“I think once they transferred him from her to the table, I was allowed to kind of stand up and go look at him on the table. And that’s when we knew that things had worked out,” said Setten.

It’s a rare and risky operation that is only done about twice a year at UW Medical Center. They’re the only team in the region that performs this type of procedure, and it isn’t always successful.

“You know, there’s always a little bit of anxiety anytime you’re doing one of these complex airway procedures,” said Dr. Dahl. “But we have an amazing team. And everybody knows the roles.”

Now, nearly two months old, Oliver is out of the NICU and breathing with the help of a tracheostomy tube. He’s hitting all his milestones, and after jaw surgery, he’s expected to lead a normal and healthy life thanks to the miracle of medicine.

“I am so grateful for the care we’ve received,” said Sanford. “They really walked me through everything so that I was ready, and I didn’t feel scared even though it was a pretty scary procedure.”