31 Days of CF: How a CF Diagnosis Changed Our Parenting Experience

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cystic fibrosis infants | Cystic Fibrosis News Today | CF awareness month | graphic showing collage of members of the CF community
CF diagnosis | Cystic Fibrosis News Today | Jamie Rudnycky and her daughter, Louisa, pose in a forested area. Louisa is wearing a bright red coat.

Photo courtesy of Jamie Rudnycky

Day 2 of 31

This is Jamie Rudnycky’s story:

Cystic fibrosis (CF) is unique to our family in that we had a life with our child before the disease appeared. We spent Louisa’s first 18 months living life without enzymes, nebulizers, or chest therapy.

Prenatal findings showed markers of CF, but because only I had turned up as a carrier, we were told not to worry. A flagged newborn screening brought CF back into the picture again after her birth, but sweat tests were normal, and we were told again not to worry.

Months later, our girl seemed to suffer constantly from colds, coughs, explosive diapers, slow weight gain, and then weight loss. We started to worry.

Our path to answers started with a gastroenterologist. When he diagnosed Louisa with exocrine pancreatic insufficiency, our pediatrician immediately recommended that we return to the CF clinic for another sweat test. Sure enough, Louisa’s sweat values soared, and genetic tests confirmed her two mutations, one of which wasn’t tested for during my husband’s carrier screening.

While we were devastated, confused, and overwhelmed during those initial diagnosis days, what we began to see emerging was a healthy child. Enzymes helped her pack on the weight, and chest therapy and nebulized medications reduced the coughs and colds. She began to thrive despite having CF.

While CF is scary, complicated, and time-consuming, when parenting, we’ve built it into our lives rather than let it consume us.

The future is bright for those with this disease, and I hold out great hope for a cure during Louisa’s lifetime!

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.

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