Meet Nicholas | Inspiring Patient Stories at Blank Children's Hospital

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Blank Children's Hospital

Nicholas

Nicholas was the first baby born with Cystic Fibrosis (CF) after the new state law requiring mandatory testing was passed. Luckily for Nicholas, early detection is the key to successfully managing his CF.

Cystic Fibrosis affects the respiratory and digestive systems, making it difficult to breathe and digest food. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.

Nicholas' mom, Kelly, knew all too well the consequences of CF. She had researched the disease when she was in junior high school and again as she studied to become a medical assistant. So when the diagnosis was made, she was terrified of what it would mean for her newborn son.

"I was petrified," Kelly admits. "But the CF team at Blank Children's Hospital gave me the support and compassion we needed. They literally and figuratively held my hand through the entire process. And they're still doing that today."

The CF team - which consists of physicians, pharmacists, therapists, nurses and Child Life specialists - taught Kelly how to give Nicholas his daily in-home treatments. She must tap on his chest with paddles to break up the congestion in his lungs twice a day. Even still, he needs to visit Blank Children's Hospital once a month for extensive evaluations.

Now an adventurous 4-year old, Nicholas enjoys playing with his favorite toys and making his mom laugh. He'll require daily therapy, medication, and evaluations for the rest of his life, as he continues to manage his CF.