Sharing our story in the hopes that people will just be more aware of CF.
On 2/17/22, our sweet baby Griffin was born. He was perfect and healthy. A week later I got an email from the state department of health as well as a call from the pediatrician that his newborn screening test came back positive for cystic fibrosis. We were assured by our ped (and google) that this was more than likely a false positive. We were referred to Children's in Pittsburgh for the confirmatory test and an appointment with the pulmonologist.
On his 2 week birthday, we made the trip down to Pittsburgh for what we assumed would be a one time visit where we'd be told he was fine and move on.
The “quick” visit turned into an almost 2 hour appointment where we learned that Griffin does in fact have cystic fibrosis. We met with the pulmonologist, dietician, nurse navigator, and social worker during that time. They went over the disease and what treatment looks like moving forward. Most of the visit was honestly a blur to me.
While most people hear CF and think of a lung condition, it also affects the GI tract and makes it difficult to absorb nutrients. Because of this, meals need to be supplemented with enzyme replacement to help proper digestion occur. Every single time Griffin eats, we have to give him a dose of enzymes called Creon in a little bit of baby food. Believe me when I say it feels very strange giving my newborn baby a spoon of applesauce every couple hours. Oliver already knows the word enzymes and that it helps baby brother's tummy. He also requires the addition of a small amount of table salt to his diet each day, as well as a special multivitamin.
Fortunately he has been gaining weight like a champ which has us all very relieved as malnutrition can be a big problem.
Although at this point he does not have any problems with his breathing or lungs, we have started to do chest exercises with him twice a day. CF causes increased mucus in the lungs, so this helps to clear that by us clapping on his chest in different spots. When he turns two, he will be fitted for a special vest that vibrates and does this job for us.
At this point, we are very grateful that he has essentially no signs of this illness and are hopeful that starting these measures early will help in the long run. The main treatments for CF have improved substantially in even just the last few years and his doctors feel that these will really benefit him when he is old enough for them.
Thank you for reading this. As I said, the donations are so appreciated, but I am also really thankful to people just reading this and being more aware of this condition ’™