When Every Breath Counts: A Family's Journey Through Complex Cystic Fibrosis

Kaycee Cochrane of Duncan, Oklahoma, knew something was different about her daughter even before August took her first breath.

The diagnosis came during pregnancy at around 20 weeks. An ultrasound showed a bright spot in the baby's intestines. Then came the genetic testing, which indicated cystic fibrosis. The words hung in the air of the doctor's office, heavy with uncertainty.

"I didn't know much about cystic fibrosis at the time," Kaycee said. "I had to learn everything quickly, like what it meant. What we were facing."

Cystic fibrosis is a genetic condition that causes thick, sticky mucus to build up in the lungs and digestive system, making it difficult to breathe and digest food. For most families, it means a lifetime of careful management. For Kaycee's family, it would mean something far more challenging.

Knowing Where To Find Specialized Care

The remainder of Kaycee’s pregnancy was filled with anxiety. Every kick, every movement, every doctor's appointment carried extra weight. She knew her baby would need specialized care immediately after birth. The question was how much and for how long.

August arrived early on a January morning. Too early. Born premature at 32 weeks with compromised lungs, the tiny newborn faced her first crisis within hours of her birth at a community hospital. August needed emergency surgery and intensive neonatal care that the community hospital couldn't provide. She was immediately transferred to Oklahoma Children's OU Health, the state's only Level I Pediatric Trauma Center.

“Oklahoma Children's offers one of the most comprehensive cystic fibrosis programs in the region and could give August the specialized attention she desperately needed,” said Oklahoma Children’s OU Health pediatric pulmonologist Dr. Richard De Vuyst, M.D., assistant professor in the Department of Pediatrics at the University of Oklahoma College of Medicine.

August had an intestinal blockage, called meconium ileus, a condition related to cystic fibrosis.

"I chose Oklahoma Children's because they had the expertise we needed," Kaycee said. "They have a dedicated cystic fibrosis clinic. They have specialists who treat complex cases like August's every day. I knew if anyone could help her, it would be them."

Oklahoma Children’s Pediatric Pulmonary and Cystic Fibrosis Clinic, one of only two Cystic Fibrosis Foundation-accredited care centers in Oklahoma, was ready to help August.

The Challenges of Cystic Fibrosis

The surgery happened quickly after arrival. But even after doctors cleared the intestinal blockage, new problems emerged. The breathing difficulties intensified.

"Both cystic fibrosis and prematurity are risk factors for lung disease," Dr. De Vuyst said. "In August’s case, these two factors combined caused a particularly challenging breathing problem."

The days turned into weeks. Weeks became months. August remained in the Neonatal Intensive Care Unit, her small chest rising and falling with mechanical assistance. Her parents spent more than 10 months, more than 7,500 hours watching monitors, listening to alarms, hoping for good news and bracing for setbacks.

August couldn't breathe on her own. She needed a tracheostomy, a surgical opening in her throat to help air reach her struggling lungs. The thick mucus characteristic of cystic fibrosis was blocking her airways, making breathing difficult.

"It was incredibly stressful," Kaycee said. "There were so many unknowns. Would she ever breathe on her own? Would she survive? I had so many fears. Every time an alarm went off, my heart would stop. Every time a doctor wanted to talk, I would brace myself for bad news."

But around August’s case, something was happening. A team was assembling. Not just one or two specialists passing through on rounds, but an entire network of experts who would become deeply invested in this one small patient's survival.

"The care team made me feel deeply involved in every decision," Kaycee said. "They never made me feel like I was just supposed to sit back and let them handle everything. They wanted me there. They answered every question. They explained everything. No matter how many times I asked the same thing, they were patient with me."

Complex Care for Complex Cases

"Treatment of these issues involved the NICU, pediatric surgery, dietitians, nursing and pulmonology," Dr. De Vuyst said. "As certain problems resolved, such as the meconium ileus, new problems appeared, such as worsening lung function. Different teams took the lead in her care. All teams stayed involved throughout her stay in the hospital."

The team met regularly, bringing together pulmonology, neonatology, the cystic fibrosis team, the tracheostomy and complex care team, respiratory therapy, dieticians, occupational therapy, speech therapy, physical therapy and nursing. They reviewed August's case in detail. They debated options. They consulted with specialists at other institutions.

"There was some discussion about doing surgery to remove part of the lung that did not seem to be functioning well," Dr. De Vuyst said. After extensive discussions, "it was decided to not proceed with this intervention."

For Kaycee, watching this level of collaboration gave her confidence even during the darkest moments.

"I didn't have to travel out of state," she said. "Everything we needed was right here at Oklahoma Children's. The cystic fibrosis clinic, the specialists, the NICU team all worked together. They all knew August. They all cared about her outcome."

A Bold Solution Emerges

But as August approached 6 months old, her breathing continued to worsen. The team knew about a medication that could change everything. Trikafta is a breakthrough drug that treats the underlying cause of cystic fibrosis rather than just the symptoms.

There was one significant problem. The medication wasn't approved for use until age 2.

"I was terrified we wouldn't be able to get it," Kaycee said. "I knew it could help her, but she was so young. Too young, according to the guidelines."

"This is something that was particularly challenging to accomplish," Dr. De Vuyst said. The clinical pharmacist on the cystic fibrosis care team worked closely with the NICU team, preparing documentation and building the case for why this 6-month-old baby needed access to this medication now, not in 18 months.

"The state insurance company also deserves credit for working with our cystic fibrosis pharmacist and our NICU team in getting this medication for August," Dr. De Vuyst said. "No matter how willing everyone involved is in getting these medications, it is always very complex. These are expensive, off-label uses of medications and require a lot of discussion and paperwork."

Most organizations wouldn't navigate that complicated process. The OU Health team did.

"They fought for her," Kaycee said. "They didn't just say it was impossible because she was too young. They made calls. They filled out paperwork. They advocated for August like she was their own child. I will never forget that."

Within weeks of starting Trikafta at just 6 months old, August began to improve slowly at first, then more noticeably. Her oxygen levels stabilized. Her breathing became easier. The thick mucus that had been drowning her tiny lungs began to clear.

Eventually, doctors removed her from the ventilator. August was breathing on her own, which means her lungs are growing and healthy. Although she still has a tracheotomy, the family hopes that will be removed in the future.

"I couldn't believe it," Kaycee said. "After everything we'd been through, after more than 300 days, to see her breathe without that trach. To see her little face without all those tubes. It was incredible. I cried. The nurses cried. We had all been on this journey together."

The medical team was equally impressed.

A Brighter Future For August

Today, August is growing stronger. Her lungs are healing. Her future, once so uncertain, now holds promise.

"Cystic fibrosis has undergone a revolution in care over the past few decades," Dr. De Vuyst said. "With new and exceptionally effective therapies being approved every few years, patients with cystic fibrosis have been healthier than anyone could have predicted a generation ago."

August's case was more complex than expected because of the combination of her prematurity and her cystic fibrosis. Yet even with this complexity, the outlook is optimistic.

"With current and upcoming treatments for cystic fibrosis, her future will be very bright," Dr. De Vuyst said. "We expect that as she grows, her lungs should become healthier and stronger every day."

For Kaycee, the journey has reinforced what she wants other families to know.

"If you're facing something like this, come to Oklahoma Children's," she said. "They saved my daughter's life. They have the expertise. They have the resources. But more than that, they care. They really, truly care about your child. They treated August like she mattered, like her life was worth fighting for. And they never gave up on her."

After 311 days in NICU and in the PICU, August finally went home on Nov. 10, 2025.

The Oklahoma Children’s Pediatric Pulmonary and Cystic Fibrosis Clinc brings together multiple specialties under one roof. They have the resources, the expertise, and perhaps most importantly, the willingness to fight through bureaucracy and complexity for their patients.

The multidisciplinary care team consists of respiratory therapists, nurses, a dietitian, a social worker, a clinical pharmacist, a mental health coordinator, a gastroenterologist/hepatologist, and pulmonologists. Each of these team members work together to provide the best possible cystic fibrosis care under the joint leadership of Dr. Nighat Mehdi, M.D., as director; Dr. De Vuyst as associate director; and Jenn Dannelley, Pharm.D, as program coordinator.

"Every member of the cystic fibrosis team here at Oklahoma Children's has a passion for caring for children with cystic fibrosis," Dr. De Vuyst said. "This condition is so complex in its presentation and therapies that I would always recommend people with cystic fibrosis get care at a certified care center such as we have here."

Somewhere in Oklahoma Children's, Kaycee watches her daughter breathe, just the natural rise and fall of a baby's chest.

It's the sound of hope, and the sound of a team that refused to give up. It is the sound of what's possible when families have access to specialized, comprehensive care at Oklahoma Children’s that treats not just a condition, but a whole child.

For more information about the Oklahoma Children’s Pediatric Pulmonary and Cystic Fibrosis Center in Oklahoma City, visit Oklahoma Children’s or call (405) 271-2234 for an appointment or a second opinion.