By Makenzie O'Keefe

(CBS4) — A family is sharing their story after their newborn baby boy had trouble breathing, leading to a rare diagnosis and surgery at just 11 days old.

In January 2020, Kieran O’Keefe was born, and his mother Ashley immediately noticed he was having trouble feeding. A nurse determined he had a cleft palate, but his parents felt something more was going on.

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“I felt his breathing wasn’t normal, so I kept kind of raising my concerns, and they kept saying, ‘Babies breathe irregularly; it’ll kind of fix itself,’” Ashley O’Keefe explained. “But as a three-time mom and nurse, I knew in my gut wasn’t right, so I started researching on it.”

That’s when Ashley came across Pierre Robin Sequence. It is a rare, sometimes life-threatening condition, where an infant is born with an underdeveloped, smaller jaw that sits further back. Babies born with PRD commonly experience trouble breathing and feeding early on due to the smaller jaw size, tongue’s position that often blocks the baby’s airway and the formation of a cleft palate.

“I told my husband about it, and he joined some Facebook groups for PRS and reached out to some of the families on there,” Ashley said. “We went to our primary care provider in the morning to check his oxygen to make sure he really wasn’t doing well with it, and they ambulanced him into Children’s because it was really low.”

That’s when they met Dr. Francom. He is an Otolaryngologist at Children’s Hospital, part of a team that treats kids across the region with cleft palates and PRS. Being a somewhat rare condition, the team sees about 10 kids a year with PRD. Dr. Francom took on Kieran’s case immediately.

“He had a really hard time lying flat on his back, every time he did, he struggled to breath.” Dr. Francom said. “He worked really hard and his oxygen levels teetered.”

Dr. Francom and Kieran’s parents decided to intervene to fix the issue with a surgery called a jaw distraction when Kieran was just 11 days old.

“We make little incisions in the bone, put surgical plates on that bone and then over the course of a week we slowly lengthen that bone,” Dr. Francom explained. “As we do that it pulls the jaw into a more normal position and it pulls the tongue out of the back of the airway and allows kids to breath on their own,”

A tough surgery for both Kieran and his parents.

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“You expect a new baby to be this blissful time, and now you’re stuck in the NICU,” Ashley said. “They’ve had a surgery, and you really can’t hold them because their intubated.”

Since that initial surgery, Kieran has undergone a number of surgeries ranging from jaw distraction to ear tubes, to palate repair — treatments, that have led him to grow into a healthy and thriving little boy.

“He had such a great response and outcome,” Dr. Francom said. “He now breaths on his own. We were able to avoid a tracheoscopy tube. He’s been feeding well and growing and just being back to being a normal kid.”

Now, Kieran can try to keep up with his older brothers and is taking on the family love of hockey.

“Hockey is his favorite thing in the world,” Ashley said. “He’s been through so much. He’s def a tough cookie.”

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While some prenatal ultrasounds may pick up on this condition, many patients go undiagnosed until their newborn struggles to breath after birth. It’s why Kieran’s parents hope other young parents can learn from their story, to trust their gut and advocate for their kids care, something Dr. Francom, agrees with.

“If you have any breathing concerns at all please come in and see us,” he said. “If it doesn’t feel well, it probably isn’t, and I’ve certainly learned a mothers intuition is probably the best thing to listen to.”

Makenzie O'Keefe