A breath of fresh air

From Geisinger media

Just three decades ago, cystic fibrosis (CF) was considered a terminal disease. Patients were only predicted to survive into their 30s. In recent years, however, the life expectancy of patients born now with CF has jumped into the 70s

 An inherited disease, CF can damage a person’s lungs, digestive tract and other organs as it affects the cells that produce mucus, sweat and digestive juices, causing the fluids to become thick and sticky. This requires an incredible amount of self-care with patients undergoing daily airway clearance, breathing treatments, special diet and supplement considerations and numerous medications.

“For some of our oldest patients, it was believed that they would not live to adulthood, but for many of our patients, we no longer believe that to be true and expect them to live a normal lifespan,” said Heather Brosius, program coordinator for Geisinger’s cystic fibrosis clinic. “We have several patients in their 60s and even 70s. We are now able to talk to our patients about going to college, careers, retirement or starting a family.”

Kaitlyn Strohl of Friendsville, Pa., never expected to have the ability to have a family.

“Honestly, I always wanted to be a mom, but I tried not getting my hopes up because I didn’t know if I’d be well enough. Nor did I think I’d find a man that would love me despite my condition,” the 23-year-old said.

After graduating from Bloomsburg University in 2022, Strohl married to her husband, Allen Michael, in 2023 and shortly after had a beautiful, healthy baby girl, Slyvie, who is now a little over 1 ½ years old. Slyvie was born at Geisinger Medical Center in Danville. She does not have CF but is a carrier of the gene.

Although pregnancy can be difficult, more CF patients have had babies in recent years, with more than 600 pregnancies each of the last three years nationwide, according to Brosius.

“We attribute this to patients remaining healthier and living longer, in large part due to the modulator therapies available,” she said.

Geisinger offers modulator therapies, like the medication Trifakta, that helps stabilize clinical courses, improve lung function and nutritional status and allow for a better quality of life.

Strohl had a relatively easy pregnancy with good lung function and overall health, but after delivery, she felt the effects on her body. She was tired, run down and had difficulty finding time for self-care while caring for her baby. She became sick and was admitted to Geisinger Medical Center a couple of times last year.

“One of the biggest problems we encounter is after delivery; mothers focus their baby and tend to neglect their own care,” Brosius said. “Our goal is to continue supporting Kaitlyn through her journey of motherhood so she can be there for Sylvie and watch her grow up.”

Strohl is doing her best to find the balance, caring for her baby as a stay-at-home mom.

“I’ve learned that having a baby is one of the best reasons to take care of myself. I’ve learned that I need to do my best, so I can be here for her as she grows up,” Strohl said. “I look forward to watching my daughter grow into a kind, respectful, and sassy individual. Growing old with my husband. All the laughs we will share. I am taking it day by day, cherishing every moment I get to spend with my family.”

Kaitlyn (Hentschel) Strohl was a 2015 Geisinger Children’s Miracle Network Miracle Kid. Learn more about her medical journey here.