On 2/17/22, our newest son Griffin was born. He was perfect and healthy. A week later we 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!
Join our team and help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
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