Remember how I said I need to prepare for everything? Well, that was magnified with our daughter’s diagnosis. After receiving confirmation that she does indeed have Cystic fibrosis, I went on the hunt for all the information I could find.
I wanted scientific information, I tried to find moms of children with CF, and I longed to connect with adults living with the disease. I searched social media sites, Google (I know I shouldn’t google medical conditions), and looked at accredited Cystic Fibrosis websites. Here are some sources I found helpful:
Cystic Fibrosis Foundation
This is the best source for information on Cystic Fibrosis in The United States. I was able to find videos about caring for an infant with CF, ongoing research, and locate our closest CF clinic.
Facebook Support Groups
On Facebook, I was able to find groups specifically for parents of children with CF. I will say that many members of these groups have older children. This can be difficult for some people. Seeing the complications that come as a child with CF gets older can be scary. I have to be deliberate and choose not to read specific posts. For me, it is crucial to enjoy our daughter’s health right now instead of dwelling on what may or may not happen in the future.
I spent time searching hashtags on Instagram to find people posting about life with Cystic Fibrosis. Some of the commonly used hashtags I found are: #cfirl #cfwarrior #65roses #cysticfibrosis. I was able to find several great accounts to follow using these hashtags.
After I did as much online research as possible, I wanted to talk to a doctor who treats people with CF daily. I went to the Cystic Fibrosis Foundation’s website and found our local CF clinic. I called them, and I was able to set up a meeting with one of the pulmonologists. Luckily, the coronavirus pandemic had not hit The United States yet.
My husband, my mother, and I met up at the hospital to talk with the pulmonologist. The CF clinic coordinator was amazing! She met us at the elevator and made sure we knew where we were going. We all sat down in a conference room. The doctor explained what CF is, what he commonly sees in children with the same genetic mutations as our daughter, and what we needed to do when our daughter was born. I recommend meeting with a CF doctor before the baby is born to anyone lucky enough to have a diagnosis before their baby is born. It was nice to have CF explained in such explicit terms. The doctor was also a source of hope for us. He told us that treatment has come so far, and there is fantastic research coming down the pipeline.
Here We Go Egan 