‘God had a bigger plan:’ Lubbock family sharing journey to raise awareness for rare birth defects

Despite being born with a rare birth defect, Callie Noble doesn't let the inability to swallow...
Despite being born with a rare birth defect, Callie Noble doesn't let the inability to swallow stop her.(KCBD)
Published: Jan. 31, 2023 at 11:36 PM CST
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LUBBOCK, Texas (KCBD) - A Lubbock family’s baby girl, Callie Noble, doesn’t let her inability to swallow slow her down.

The 18-month-old was born at UMC with a rare birth defect, spending more than three months in the NICU before going home. Her family calls her a miracle, along with her three sisters.

Her parents, Tanner and Kami Noble, had less than a 10 percent chance of getting pregnant. They quit their jobs and moved out to the Boys Ranch to become house parents. They became pregnant, and nine months later, their first daughter was born. After that, they had two miscarriages and then gave birth to their second daughter. Only nine months later, they found out they were pregnant with the twins, Chloe and Callie.

“So, God definitely had a bigger, better plan than we did,” Kami said.

Kami says she knew she it was considered a high-risk pregnancy when she found out she was having twins. Despite being born seven weeks early, there were no complications with the birth, and the babies were taken to the NICU.

“She was fine, everything was fine. And then about a week in, we noticed she wasn’t swallowing,” she said.

Callie stayed in the NICU for more than 100 days, undergoing several tests and procedures. After lots of bloodwork and MRIs, Callie still wasn’t swallowing. At two months old, doctors inserted a feeding tube, and a month later, a trach.

“Every step along the way they’re trying to figure out what’s wrong with her and nobody had an answer for us, and nobody could tell us this is what is wrong,” Tanner said. “So, that was the hardest part, is just not having an answer, and the doctors, it was really hard on them, too, not giving us an answer.”

Eventually, doctors discovered Callie was born without two cranial nerves, her glossopharyngeal (cranial nerve 9) and vagus (cranial nerve 10), both of which play a part in helping you swallow. Now, her family or support medical staff watch Callie 24/7, draining the secretions in her throat several times an hour. While her parents and nurses help do the job for her, she’s proved she’s a fighter.

“She’s sitting up now and she can move her arms and legs. She can see, she can hear, there’s so many things she can do. And focusing on all that makes all the difference, I think,” Kami said.

Callie and her family’s strength and fighting spirit led them to become the ambassador family for this year’s March for Babies. It’s hosted by the March of Dimes, which helps fund research that impacts babies like Callie. Every year, about three percent of babies are born with a birth defect in the United States.

“I love like the research they’re doing, and they’re doing a heart test on every baby now that was never done before. There’s just so many cool things that are going to make a huge impact on all these babies,” Kami said.

January is known as Birth Defects Awareness Month, something the Noble family wants to be an active part of. Callie’s parents hope their story encourages other families to stay focused on the positives, and to know they’re not alone.

“You’re going to be faced with problem and problem and challenge all the time, but with the support of family and community, you can get through it,” Tanner said.

The March of Dimes is getting ready for its March for Babies later this spring. It’s at the American Windmill Museum on May 6. Registration will begin at 9 a.m. with the walk to begin shortly after at 10 a.m. Organizers say there will be games, activities, a Super Hero race and more. You can donate to the cause and support families like Callie’s here.