Published: October 2, 2025
Estimated reading time: 5 minutes
Owen Twigg was born fighting. His strength and a mother’s devotion would inspire Courtney Twigg to pursue a new path in life and in a career.
Owen was born March 7, 2020, with a cleft lip and palate. At the time, his mom, Courtney, had been working as an emergency medical services dispatcher for 10 years.
“I was OK with doing that the rest of my life, but things changed,” Courtney said. “Both of those things [Owen’s congenital conditions] are easily fixable with surgeries; people do it all the time. So, we didn’t think much about it.”
Soon, the family learned there was more going on than they initially anticipated.
Owen was quickly transferred to Norton Children’s Hospital, where he had his first surgery at just 20 days old, to insert a gastrostomy tube (G-tube) for feeding.
“He had to get a G-tube put in because of his bilateral cleft palate. But the biggest concern was his oxygen. He couldn’t keep it at an appropriate level on his own,” Courtney said.
A little over two weeks later, Owen was having another surgery, a tracheostomy to create an airway for a breathing tube. According to Courtney, the expectation was that if Owen did well, he would go home soon.
While Owen was in surgery, he went into cardiac arrest for 10 minutes.
“What they didn’t know is that Owen had something called a Stage 3 laryngeal cleft,” Courtney said.That meant is that there was an abnormal gap between Owen’s larynx and esophagus .
Owen’s surgical team was able to resuscitate him and place a breathing tube, but he wasn’t out of the woods and endured 10 days in a coma.
Owen spent much of his first year in and out of hospitals — 278 days across four facilities in three states. Genetic testing finally revealed the underlying cause: Opitz G/BBB syndrome, an extremely rare condition that affects the midline of the body.
With a condition so rare, the path forward for Owen was unclear. As a single mother with two older sons, living on her own at the height of the COVID-19 pandemic, Courtney recalled feeling lonely and isolated.
“I was learning everything about my son as everyone else was. We were just flying by the seat of our pants most days, figuring it out, and I had nobody to talk to,” Courtney said.
Throughout her son’s care, Courtney found strength and compassion in the guidance of Owen’s respiratory therapy team.
“One of the biggest reasons why I wanted to become a respiratory therapist while I was there is because I was very much alone,” she said. “I’d never want a kid or parent to feel as alone as I was. I wanted to be that resource or that community for somebody else.”
Owen was very much an active toddler. Despite all he faced — multiple cardiac arrests and a coma — he had no adverse neurological effects. This meant that Courtney often would need to be creative when balancing a toddler’s boundless energy and delicate medical equipment like a ventilator.
By June 2023, Owen’s lungs were strong enough for him to come off of the ventilator, but he started having more heart complications.
“He’d be sitting on the couch playing with his toys, and his heart rate would be 170 resting,” Courtney said.
She called Owen’s doctor, and together they made a plan and scheduled Owen for another surgery for the first week of October.
“We didn’t make it to that,” Courtney said. “[At] 4:45 p.m., Sept. 29, 2023, Owen lay down and didn’t wake up.
“He affected so many people without really ever speaking a word. Owen’s funeral was standing room only.”
At the time, Courtney was in the midst of her prerequisite courses for her respiratory therapy studies.
“My son died on Friday, and I went to class Monday,” Courtney said. “I was ready to quit. I thought, ‘What kind of respiratory therapist am I going to be if I couldn’t save my son?’”
With encouragement from her father, Courtney went to class, and something unexpected happened. She and her classmates took an exam that day, and Courtney scored a 95%, reaffirming that this was the right path for her.
Courtney received her acceptance letter to the respiratory therapy program that following May and is currently a student in Norton Healthcare’s Respiratory Therapy Apprentice Program.
Now set to graduate with her respiratory therapy degree in December 2025, Courtney works at Norton Children’s Hospital, surrounded by many of the same respiratory therapists who once cared for Owen. When asked if she was sure she could handle being back at Norton Children’s, she was adamant.
“I said absolutely, I don’t want to be anywhere else. It’s still hard sometimes — I’d be a liar if I didn’t say that. It hasn’t been two years yet that he’s been gone. But, it’s so comforting, because all the [respiratory therapists who] used to take care of him are my co-workers now,” Courtney said.
Reflecting on her journey, Courtney is sure that everything she has faced will continue to help her grow.
“One lesson that I’m still learning every single day is turning grief into motivation,” she said. “Those experiences help you become a better clinician.”
In the spirit of helping clinicians grow, Courtney donated all of Owen’s supplies and equipment on her first day of her respiratory therapy classes.
“His supplies now teach the next generation of respiratory therapists,” Courtney said.
As she approaches her graduation, Courtney takes every step with determination to honor Owen.
“It’s not just only my legacy,” she said. “It’s my son’s.”