Pediatric Intensive Care Unit (PICU)

Patient Stories | Philip and Emily and Subglottic Stenosis

Personalized Care Approach Gives Patients and Families a Voice in Their Treatment

As a mother of two children with significant upper airway issues, Cindy has spent years navigating the complexities of their care. Her twins, Philip and Emily, were born with severe respiratory conditions and required tracheostomies (surgical procedures to insert a tube into the trachea, or windpipe) just to breathe. 

“Their airways were completely blocked,” Cindy said. “They had no way to breathe without assistance.”   

Philip and Emily were diagnosed with subglottic stenosis—a narrowing of the larynx, or airway—and faced challenges their first few months of life.

“We felt there was more help out there somewhere,” Cindy said, noting Philip and Emily were always in and out of the hospital near their home in Georgia. 

The Path to Cincinnati Children’s 

As it turned out, one of the twins' doctors had completed her fellowship at Cincinnati Children’s and recommended Cindy seek a second opinion there. 

From where Cindy lived in Georgia, Cincinnati Children’s was nearly 600 miles away. It initially seemed like a joke.

“When she said, ‘Cincinnati Children’s,’ I have this very clear memory of looking at her like she had three heads,” Cindy recalled. “I said, ‘Like in Ohio?’ And she said, ‘Yes, that’s where Cincinnati is located.’”  

Once the initial shock faded, though, Cindy scheduled the appointment. She’s known it was the right decision ever since their first visit, when the twins were 1 year old. 

“Things that I saw as problems, they saw as problems,” Cindy said. “The doctors were just as concerned about improving our kids’ lives as we were. Nobody said, ‘Oh, that's normal.’ Nobody said, ‘Oh, that's to be expected because your child was born so early.’ Or ‘Oh, that's just what happens. We can't do anything about that.’”

Three months after their first visit, the twins were doing much better. Emily, for instance, was off the ventilator for up to 12 hours a day, whereas before she couldn’t be off for more than an hour or two.

Today, nearly a decade later, Philip and Emily are still Cincinnati Children’s patients. 

“We got so much improvement, so fast,” Cindy said. “We were all in. We’ve been up here like 80 times now. And I wish I was joking about that number, but I’m really not. But we’re happy with our choice. We know we’re giving our kids the best care possible.”

A Different Approach to Sedation

On a visit last spring for Philip’s tracheal reconstruction surgery, Cindy had prepared herself to strongly advocate against using sedation. Over the years, she’d learned to communicate her children’s unique needs, particularly their preference for avoiding unnecessary sedation during procedures like intubation.

“I was prepared for a challenge,” she said. “But it was zero challenge.” 

Instead of a fight, Cindy found Daniel Loeb, MD, an attending physician in the Pediatric Intensive Care Unit (PICU), already on the same page.

Dr. Loeb is a longtime supporter of varied approaches to sedation and intubation, and advocates for “liberalized sedation”—a method that minimizes or eliminates sedation—whenever possible. 

“It’s worth pausing to see if it’s necessary,” Dr. Loeb said.

Ultimately, he recommended the liberalized sedation approach with Philip.

By avoiding sedation, patients like Philip who are comfortable staying awake during a procedure like intubation can stay engaged, which can lead to better communication and faster recovery.

“He got to get up and walk around,” Cindy said. “Play on his iPad, watch movies, Facetime with his siblings. He could do so much more, and we didn’t have any of the weaning off sedation.”

Philip and Emily have told Cindy they don’t want to be asleep unless it’s necessary. “They want to be asleep for surgery,” she says, “but they don’t want to be asleep as a life choice. It made sense (for our kids) not to do it. We didn’t have to go the most aggressive route.” 

Individualized Patient Care at Cincinnati Children’s

Dr. Loeb hopes to expand the use of liberalized sedation, when appropriate, to benefit more families.

“There are other kids out there like Cindy’s who could benefit from this approach,” he said. “Our goal is to constantly improve and provide the best care tailored to each patient.”

Dr. Loeb’s approach is rooted in the belief that every patient’s needs are unique.

“From a Cincinnati Children’s perspective, Cindy’s children may seem like common cases,” Dr. Loeb said. “But the types of surgeries and care we provide here are highly specialized. We usually have one or two patients like them in the ICU at any given time.”

For children who require breathing tubes for extended periods, avoiding sedation can make a significant difference. Sedation is often misunderstood as being akin to sleep, but Dr. Loeb explains the distinction: “True sleep is restorative and allows the body to heal. Sedation, however, is a state of suppressed consciousness that can come with risks, including pneumonia and difficulty weaning off the medication.”

While sedation is appropriate for many patients, Dr. Loeb emphasizes the importance of tailoring care. “For children like Cindy’s, less sedation means they’re healthier, stronger and able to interact with their caregivers. They can tell us what they need, whether it’s going for a walk or using the bathroom.”

The Patient’s Voice Matters

This personalized care extends beyond medical procedures. When Cindy’s twins were toddlers, they were nonverbal due to their airway issues. A home nurse suggested teaching them American Sign Language (ASL). By the time they were 18 months old, they were communicating via sign.

“We worked hard on it,” Cindy said, recalling a humorous moment when her daughter signed back sassily during a disagreement. “I had to explain that you don’t talk back to Mom in any language—ASL or English.”

Cincinnati Children’s embraced the twins’ use of ASL, arranging interpreters during visits so both parents and kids could learn. “The interpreters taught us medical signs we use in everyday life,” Cindy said. “It made a huge difference in how we navigated their care.”

Now 10 years old and verbal for nearly seven years, the twins still use ASL occasionally, especially in crowded settings.

“They’re miracles and we’re making it up as we go along,” said Cindy. 

(Published February 2025)