A CF Diagnosis: From One Parent to Another
Last updated: May 2021
Going back to that Friday afternoon in August 2008 is still difficult for me to do. I was fatigued. I had an 8-day-old baby that wasn't eating or sleeping. I was emotional and trying to figure things out. I had this beautiful son who was so small and so fragile. That afternoon was quiet, so we took a nap on the sofa together, just he and I. We were both exhausted. I went to sleep as one mother and woke up a different one altogether.
My child's cystic fibrosis diagnosis
My husband received a call from our son's pediatrician that his newborn screening had come back. She had said he needed a sweat test that Monday to confirm cystic fibrosis. As I called the doctor back to talk to her myself, I looked at my husband. His head was in his lap, shaking from crying. The rest of the day is a blur.
I spent that entire weekend in a fog. Monday before we left for the hospital, I stood in the shower, crying, praying, and trying to figure out what I had done to make this happen. Our life that we knew was now different. Happiness no longer existed in my world. How could it? My new son was just diagnosed with a life-shortening disease. It was something that I couldn't seem to wrap my head around.
There are things that, looking back, I wish that I would have known. If you are now facing your child's cystic fibrosis diagnosis, please remember:
Do not Google
The Internet is an excellent resource for research. However, I think one of the most detrimental things that I did was type "newborn cystic fibrosis" into that search bar for the first time.
LIFE EXPECTANCY. MORTALITY. TERMINAL. It was all there. Every link after link that I clicked was filled with bad news. In hindsight, what would have been best was to stay clear of the computer completely. All I read was worst-case scenarios, and all that did was increase my anxiety. Your research should come from websites backed by medical professionals and/or sites that are heavily monitored.
There is support available
I had no idea that there were communities, even back then, that were available for me to join for support. Seeking support outside of my family would have made all of the difference in the world. I could have talked myself through the feelings and anxiety that I was feeling and, in turn, heard stories from other mothers that had gone through the same thing.
Reach out to one of the many support communities on social media. Get a therapist. I have one, and it's been great to have her listen to the things that I have in my head. The good and the bad. Therapy has been a great tool to have available to me.
What you are feeling is valid
Hearing that my child has been diagnosed with cystic fibrosis was a scary thing. There are a lot of unknowns with the disease, and there is a lot to learn. It is overwhelming. It is an enormous undertaking and it isn't easy. There are going to be some dark times, and there are going to be some unsteady times. What you need to remember is that everything that you are feeling and everything that you are thinking is completely normal. Feel what you need to feel and move forward. You are your child's best advocate. In order to be their voice, you need to allow yourself to experience every emotion and thought that you need to.
While this is not a diagnosis that I wish my son had been given, it hasn't been the death sentence that I was so sure it would be. There have been some worrisome and rocky times, but we have a great team of CF doctors that are on our side, and that put our son's best interests first. As the years pass, more resources become available. I no longer feel alone. I feel surrounded by an army of people who I know are willing to listen. Navigating raising a child with cystic fibrosis can be emotionally taxing, but you are never in it alone.
Share your favorite tips for caregivers in our forum.
Have you participated in clinical or market research before?