Starla Cossey

Cystic Fibrosis is a degenerative, genetic disease. CF affects around 40,000 people in the United States everyday and over 100,000 people worldwide. CF affects the lungs, pancreas and many other organs. 

I’ll take you back. All the way to October of 2019. My husband and I along with my bonus daughter had just welcomed a sweet little boy into our family. Charlie was the best baby right from the start. He always seemed so calm and serene. He was a missing part of me that I never knew I needed. We brought him home after a couple extra days, due to jaundice. We started loving and laughing as he began to grow and create his own little personality. Then everything came crashing down around me. I was at the store. First time I had left him, I just had to run grab one thing. I’ll be right back! I get a call from a number I didn’t recognize. Mrs. Cossey, are you the Mom of Charles? I told her yes and confirmed his date of birth. This is the nurse with the pediatrician’s office. We got Charles’ newborn screen results in. It looks like he has two genetic markers for C Y S T I C F I B R O S I S. Every sound in the usually loud store silenced. I was alone. You could have lit a fire right next to me and I probably wouldn’t have known. I couldn’t tell you anything I did until we were referred to Children’s where they scheduled a sweat test to check for the amount of salt in his sweat and we saw a CF specialist later in the day. The results were in. He was below the conclusive number for the test. He was not CF. This was good news, I was relieved. Until our doctor explained this could change at anytime. The genetic mutations my baby had normally don’t present CF symptoms immediately. It could take a while. We were in the wait and see gray area of CFTR-related metabolic syndrome(CRMS). We would retest and keep a close eye out for new symptoms. I knew what to watch for. I was prepared. Each following test came and went with no changes. Maybe he’s just a carrier, I would tell myself. With so much hopeful strength, I could muster. Fast forward to October of 2021. We welcomed yet another sweet boy to our family. C.J. came into the world a wrecking ball! He is the poster child for the youngest sibling. Fire, fury and fascination. Yet again, but more expected than the last time. “Your baby has two genetic markers for CF. You will need to see a specialist.” Again: same story, different boy. No symptoms, normal sweat test. We went on about our life. Always keeping an eye on symptoms, seeing the specialist for sweats and checkups but living our life with 3 perfectly normal kids. It was time for our yearly sweat and visit with the Pulmonologist. Our doctor we had seen since Charlie’s initial sweat test was no longer at Children’s so I asked for recommendations and the scheduler gave us a new doctor. No biggie we’ve BEEN doing this! Nothing new, sweat test in the morning, grab some lunch, see the specialist, and go home. That’s how our visits to Children’s had always went before. It would be the same right?

But, it wasn’t the same. It was no where near the same. We got to the lab. Did our sweat tests. Charlie did amazing, as usual. C.J. however, did not sweat enough. We knew when we left the lab we would probably have an inconclusive result. We waited until it was time to come back and see the new Dr. We waited and waited. The boys got restless, my husband and I got tired of waiting. I kept telling my husband, “We should be thankful we are having to wait. It’s probably because there’s a bunch of sick kids they need to see promptly.” “Our kids are healthy, we are just here as a precaution. We can wait for them to see the kiddos that are sick.” That knock finally came. This new face walked in and greeted us. He was so nice. He started some small talk and then those words that came next, “Which boy do you want to talk about first?” My husband jokingly said, “Depends is one bad news?” The doctor said “Well, one is no news.(C.J.)” Charlie on the other hand had moved from the borderline sweat to over the unmagical number. 60. We were 64 & 66. There’s those words again. With the change in his sweat test, he will have a change of diagnosis to C Y S T I C F I B R O S I S. We asked tons of questions. He answered. But, ultimately we were told to wait for the coordinator of the CF clinic to call us and set up an education day at the clinic. The doctor left, the nurse came in and took swabs to check for bacteria in the boys and we were good to go home. My whole world was just turned upside down and now I just have to go home? Just go home? Cook supper, wipe butts, do bedtime. My children have an incurable disease that I gave them and I’m just supposed to go home? But, that’s what I did. I went into Super Mom mode though, that very day. My boys have CF but CF does not have us. So, for the time being, I’m learning everything I can about a disease I never even knew I was a carrier of. Part of that, is raising awareness and creating more research to create even better treatments and outcomes for anyone dealing with Cystic Fibrosis. 

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