Born With Cystic Fibrosis, Caleb Forges Forward

Thanks to an innovative pharmaceutical and a daily regimen of care, Caleb and his family are meeting the challenge of a difficult condition.

Caleb was born seemingly healthy, weighing 8 pounds, 14 ounces.

But a few weeks later, his parents were meeting with specialists from Children’s Healthcare of Atlanta Cystic Fibrosis Program. A routine metabolic screening had revealed that Caleb had genetic mutations characteristic of cystic fibrosis (CF).

“We didn’t have any family history. And having an older child without CF, you know, it came out of left field,” says Erin, Caleb’s mom.

CF is a progressive, life-shortening genetic disease that causes the body to produce thick, sticky mucus within the lungs, pancreas and other organs. This mucus can clog the lungs, encouraging bacterial infections. In the pancreas, it can prevent the release of enzymes that help the body digest food and absorb nutrients.

An early intervention

“While I would not wish it on my worst enemy, I’m so grateful we knew about it as early as we did and could get him into the CF Program,” says Erin. “Because I think it changed the trajectory of the progression of his disease.”

For the first year of his life, Caleb visited Children’s every month. After he turned 1, those visits became quarterly. Each two-hour visit includes a steady stream of nurses and specialists committed to Caleb’s well-being.

At home, Caleb’s family carries out daily treatments that take about 90 minutes. Central to the regimen is vest therapy. Caleb wears an inflatable vest that vibrates with increasing intensity, loosening and thinning out the mucus that’s accumulated in his chest.

Recently, Caleb’s treatment has also included a drug called Kalydeco, which addresses the underlying genetic defect of CF. Since Children’s is a CF Foundation–accredited care center, Caleb’s care team was familiar with the groundbreaking drug early.

Since adding the Kalydeco, Erin noticed a marked improvement.

Compassion and expertise

While CF is a significant challenge, Caleb’s family is grateful to live near Children’s and have access to the compassionate, innovative care available there.

“It seems like in life sometimes you have to choose which you want: someone who’s going to be compassionate and make you feel better or someone who’s going to be clinically competent and innovative,” says Erin. “I’ve always felt like Children’s is the perfect blend of both. I never felt like they forgot this was my world.”