The beginning of our Cystic Fibrosis Journey

by Navy Christian

SamRose2BlogI’ve mentioned elsewhere that I decided to find out the truth of evolution, creation, and Christianity because of our daughter’s cystic fibrosis. We all have our prime movers in our lives, and cystic fibrosis is mine, at least as far as the research into evolution is concerned. So, to show you my prime mover, on the 10th anniversary of the fateful day that brought our lives into contact with CF for the first time, I give you the beginning of our journey.

12/8/2005-Samantha was born healthy after an uneventful pregnancy and planned C-Section. We were unaware at the time, but Samantha’s blood would be tested for CF in a standard newborn screening (NBS). This is now common practice in all 50 states in the USA and in many countries.

12/19/2005-Samantha’s cough concerned the lactation consultant who essentially ordered us to have her checked out. I remember thinking that the cough was odd, but it didn’t register in my mind that it could be something bigger than just a cold.

12/20/2005-General pediatrician dismissed the concerns about the cough. He talked about how God gives new babies lots of fat stores to protect them from weight loss in the first week or so after birth. He wanted to follow up, but wasn’t concerned. We now know that her weight loss was as much due to cystic fibrosis as it was my wife’s lactation issues.

12/21/2005-We received a voice mail message from the Pediatric Pulmonary department stating they had results back from Samantha’s newborn screening, and they needed to see us the next day to tell us the results. We googled the name of her doctor to see what he specialized in because we were terrified. They had cleared his lunch hour to meet with us. We realized immediately that this was a very big deal, though we couldn’t figure out what it meant by searching for him on the internet.

12/22/2005-Exactly 2 weeks from the day Samantha was born, we received the news that Samantha tested positive for CF. That was a very crazy day, with the corpsman announcing the news to us nonchalantly before the doctor got a chance to talk to us about it first. I’m still bitter about that idiot.

If you want to read more, Alicia has written about those first 2 weeks on her blog, and it gives an accurate and detailed description of what we were feeling.