Morgan Lowenadler

Our story begins back in 2020 when I was pregnant with Isla. I had some genetic testing done and was offered a carrier screen for cystic fibrosis. We absolutely did not expect anything to come from this, and when the results came back as a carrier, we where reassured that the odds of my husband also being a carrier, and then continuing on to have a baby that would be affected where not very likely. We were naive, so we did no further testing at that time. When Isla was born on January 25th, 2021 she was born with a meconium ileus and as a result of that some perforations in her bowel. When they asked if we had any testing done and I confirmed I was a carrier of CF, they told us that this was likely the cause. Isla subsequently spent 72 days in the nicu at children’s hospital of Pittsburgh and would have 3 surgery’s by the time she was able to come home with us. Navigating this as first time parents was not for the faint of heart, but our team of doctors could not have been more helpful to us. It became all we knew and is now second nature to us. When learning about CF and all of the amazing advancements happening within the community we never even questioned whether we would have more children. Elliot was born on February 1st, 2023, and a few short days later, we discovered he too had CF thanks to cord blood testing we did at birth. Although we had hoped that this would not be the case, parenting a child with CF is all we know so we felt prepared and ready to take on that challenge thanks to the knowledge we’ve collected over the last 2 years with Isla and her team of doctors who know feel like extended family to us. It’s crazy to think that 2 years ago, the only knowledge we had about CF was from the movie “6 Feet Apart”… but we now feel so passionately about spreading awareness for this disease and doing our part in order to ensure a very long and healthy life for not only our children, but every individual with CF.