Mom turns her grief into purpose after losing son to rare genetic disorder

LOUISVILLE, Ky. (InvestigateTV) — An estimated 30 million Americans are grappling with a disease considered to be rare.

A rare disease is categorized as fewer than 200,000 people in the U.S. have been diagnosed. About half of those are children, some of whom will not live to see their fifth birthday.

Medical challenges and complications

Carter Twigg held her son Owen for the last time on Sept. 29, 2023, after he went to sleep and didn’t wake up.

Owen Twigg was born with a cleft lip and palate and complex respiratory conditions. By age one, he had spent 278 days in hospitals across three states and undergone multiple surgeries to help him eat and breathe.

“Nothing really stopped him. He climbed everything,” Carter Twigg said. “He loved movies. Loved Finding Dory, Moana.”

Genetic testing revealed Owen had Opitz G syndrome, an extremely rare genetic disorder that causes midline body defects, primarily affecting facial features and throat structures and leading to breathing and feeding issues.

The genetic disorder impacts about one in every 50,000 to 100,000 boys.

Owen experienced cardiac arrest nine times in his three and a half years of life. During surgeries, complications arose frequently.

“It’s like plugging a hole in a sinking ship. You want it to stop, be better, but new holes spring loose as soon as you fix one,” Carter Twigg said.

The rarity of Owen’s condition made his treatment path unclear.

Carter Twigg, who worked as an emergency medical services dispatcher and EMT for more than 10 years, found herself in an unfamiliar position.

“I remember being that mom on the side of the bed, scared, asking questions,” she said.

Facing an uncertain future

The reality of Owen’s prognosis weighed heavily on his mother. She slowly learned she would never get to teach him how to drive, he would never go to prom or even high school. “So as awful as that is, we made everything memorable.”

“Parents aren’t supposed to bury their children. They are supposed to bury me,” she said.

Finding support and new direction

Carter Twigg’s professional training helped her remain calm during Owen’s medical journey, but the emotional toll was different when it involved her own child.

“I’m very used to being calm in chaos. That did help a lot during the process of his journey, but when it becomes your own child, it’s different,” she said. “You have to have a good, solid support.”

That support came from Owen’s respiratory therapy team at Norton Children’s Hospital.

“We had so much love, so much support from nurses and respiratory therapists everywhere we were,” Carter Twigg said.

The experience changed her career path. She decided to become a respiratory therapist and returned to school.

“I was okay with being an EMT forever. I was okay. Yeah, things changed, not in the way you expect, that’s for sure,” she said.

Turning grief into motivation

Carter Twigg recently graduated and now works at Norton Children’s Hospital, the same place where Owen received care, alongside the respiratory therapists who helped him.

“I’ve been turning grief into motivation. It’s the hardest one that I have learned, but it’s possible,” she said.

“I want to take care of people, kids, and take care of moms and dads and help them and let them know they are not alone,” Carter Twigg said.

She donated all of Owen’s medical supplies to the respiratory therapy program at Ivy Tech, where they now teach the next generation of respiratory therapists.

“I think Owen would be proud of you looking down on Mom,” WAVE Anchor Maira Ansari said to Carter.

“I sure hope so. I really, really do,” she said.