Surgery helped Titus go from struggling to thriving with every breath

The first, but not most urgent, concern doctors noticed with Titus was a cleft palate, or a split in the back portion of the roof of his mouth. Surgery to repair this condition could wait for at least a year.

More troubling was Titus' inability to gain weight. He couldn't nurse because of the cleft palate and virtually every drop of bottled milk he tried to drink would dribble out of his mouth.

Titus' breathing was also worrisome because it was quite noisy, especially at night. He also stopped breathing intermittently — for 3 to 5 seconds at a time, then catch his breath, gasp slightly and resume breathing.

His local pediatrician in Sun Prairie, Wis., referred Titus to American Family Children's Hospital in Madison, where UW Health pediatric otolaryngologists — ear, nose and throat (ENT) surgeons — expressed serious concerns about Titus' weight and breathing issues.

"Being told that your baby is ‘failing to thrive' was pretty scary," said Nicole.

Nicole and Eric learned that what little milk Titus was getting into his mouth was going not into his stomach, but his lungs — a dangerous condition called aspiration. Immediately, Titus was hooked up to a feeding tube because of the risk of further aspiration. He soon began to gain weight, a ray of sunshine amid so many clouds of concern.

Jaw deformity pinpointed as culprit

Additional testing revealed that Titus was laboring to take in each breath. Very little air was getting into his lungs because his tongue would fall back further than it should, blocking most of his airway.

Ultimately, Titus's troubles were attributed to a jaw deformity. He was born with a small lower jaw that was set back just enough to prevent normal rhythmic breathing. He also was diagnosed with Pierre Robin Sequence, which comprises three conditions:

• A smaller than normal, recessed lower jaw

• A tongue that falls too far back

• Airway obstruction, making breathing difficult

It wasn't long before UW Health pediatric craniofacial surgeon Catey Garland, MD, sat down with Nicole and Eric to discuss a remedy — a rather jarring sounding procedure called jaw distraction surgery.

"For babies like Titus, this surgery lengthens the jaw, freeing up more upper airway space so he can eat, breathe and sleep normally," said Dr. Garland. "We do this by carefully separating the jaw and inserting what we call a distraction device. It has two small rods attached to either side of the jawbone. The other end of the rods, which slightly protrude from the side of the face, have a screw on the end.

"Twice a day for about two weeks, a doctor or nurse gently turns each screw, further separating the bone, millimeter by millimeter. During the hours between the screw adjustments, the jawbone naturally grows to fill in the gap and the jaw slightly lengthens. Once the jaw is extended far enough, usually a few months later, the baby comes back and we remove the distraction rods."

To Nicole and Eric's ears, this all made sense. They had all the confidence in the world in Dr. Garland and her team. Still, the idea of putting their baby through such a big surgery was overwhelming, as it would be for any parent.

Pager was lifeline during surgery

Titus was not quite 2 months old on Feb. 25, 2019, the day Nicole and Eric kissed their baby boy goodbye just before he was taken to the operating room. For the next few hours, their lifeline would be an electronic pager that periodically flashed short updates such as:

"Surgery is progressing. Titus is continuing to do well."

"Dr. Garland is finishing up. Please head back to the operating floor."

Late that afternoon, Dr. Garland met with Nicole and Eric, assuring them that Titus did great.

"Everything went according to plan and Titus' vitals stayed strong throughout surgery," said Nicole. "Tears of joy and relief came to our eyes knowing that things went so well."

Titus made it through but recovering from such a massive surgery would have its share of bumps along the way. For the next seven days, he was in a medically induced coma, tethered to a ventilator and countless tubes and wires.

By Day 5 in the Pediatric Intensive Care Unit (PICU), Dr. Garland asked Nicole if she wanted to try turning the screws on Titus' jaw distraction rods herself. "Seriously?" Nicole said.

Not hesitating for long, Nicole gave it a try.

"It was surreal," she said. "I felt the clicking, which was kind of eerie, but it made me feel like I actually did something to help open my son's airway."

Family adjusts to 'studio apartment'

After a week in the PICU, Titus was moved to a regular hospital room on the P4 Unit — a place that Nicole and Eric would begin calling their family's new "studio apartment." With two other children — ages 8 and 5 at the time — life was chaotic, but the Nee family made it work, thanks to lots of support from family and friends.

"Thankfully, we only live 30 minutes away, so we managed. I slept at home a couple of nights when Titus was in the PICU, but once he moved to P4, I spent every night in his room while Eric headed home each day to care for our two other kids," Nicole said. "It wasn't easy, but Eric and I would keep reminding ourselves, 'It's treatable, it's curable and we have a plan.' "

After more than seven weeks in the hospital, Titus finally got to go home, where he would continue to heal. In July 2019, Titus's jaw had grown to the point where Dr. Garland could take him back to the operating room and remove the metal rods from his jawbone.

Six months later, in early 2020, Dr. Garland performed the cleft palate repair surgery to close the gap in the roof of his mouth. Like all children born with a cleft palate, Titus will return for follow-up care, perhaps until high school.

"We will keep a close eye on him, especially to ensure proper speech and language development," said Dr. Garland.

Can't say enough about their baby's care

Reflecting on all the stress of the past 14 months, Nicole and Eric could not be more grateful for the care their son received.

"From the doctors to the nurses to PT, OT, and even Dan who runs the hospital café store, everyone was so wonderful to us," Nicole said. "I'll never forgot one day Dr. Garland brought me a cup of coffee and some chocolates and just sat with me for 2 hours. It didn't even feel like doctor and patient, but more like two friends."

Nicole and Eric also appreciate how much they as parents were included in the daily rounds when the doctors and nurses involved in Titus' care would discuss the plan for the day.

"You always want to advocate for your child, but you don't want to have the big ‘X' on your chart as the crazy lady," Nicole said with a laugh. "Really, though, I am so thankful not only for the amazing care, but the great relationships that made so many people at the hospital feel like family."