The Hardest Day as a Parent-My connection to Cystic Fibrosis

I have seen Claire Wineland take over the internet lately and it made me think of my own connection to cystic fibrosis. It is a disease I didn’t even know existed until last year when it could’ve changed my life forever.

I’ve cried writing and editing this post more than any others. That’s because this is the story of the worst day of my life. I’m also going to share what happened after and the process of finding out Tinley is a cystic fibrosis carrier.

The day we got the call. I had to put her in camo because if she did have cystic fibrosis I knew she would be a little fighter.

The Phone Called that Changed EVERYTHING

I can recall the day so clearly in my mind. It was a few days after Alex went back to work and I was home alone with my newborn. Tinley’s doctor called me directly and I just thought it was to discuss how she was doing between appointments. Instead he told me that there was something that showed up in her testing from when she born.

My heart just stopped. I started looking at my bay wondering what could be wrong with her, she is perfect. He then told me that she could possibly have cystic fibrosis. He gave me a brief description of what it could be and we set up an appointment to get more tests done. After we hung up I did the worse thing possible and googled cystic fibrosis, NEVER DO THIS!

Cystic fibrosis is a buildup of mucus in the lungs that essentially weighs them down like cement. This scared the living day lights out of me because Tinley was born with excess mucus in her lungs. I convince myself that she had cystic fibrosis. Then I looked at the life expectancy and then came the water works.

The oldest average for someone that has cystic fibrosis is 37! I immediately thought about how I would have to bury my baby some day and that is a parents’ worst nightmare. I couldn’t stop crying and I only wanted to hold her.

This became a day of me just holding her. I did nothing but hold her. I forgot about the laundry, the dishes that were piled up and I let my side table just collect all of the mess. I was taking this time to feel sorry for myself and worry about my Tinley girl.

Breaking the News

I called my husband but since he was working he didn’t answer, I called my mom but she was also working, I texted my best friend and I called my mother-in-law. I broke down on the phone when I told her. She was the first one I explained all my concerns. I didn’t know what to do with myself I was a broken momma holding my perfect baby.

My husband did call me back and I broke the news to him as well. I told him as much as I could and he googled too. He rushed home to us and we just laid in our bed staring at our baby. We cried together and we just held each other all night. We watched her every move and every time she sneezed or coughed we were more alert than ever. We really did convince ourselves that she had cystic fibrosis.

Moving Forward

At the time of the news Tinley was only two weeks old and to get the sweat test, that is the best at diagnosing cystic fibrosis, to get the best results that baby should be at least a month old. We had to wait two weeks and then some because we were unable to make her first appointment. She didn’t get her initial test until almost 2 months old due to scheduling. The wait was torture.

I remember telling my husband I didn’t want any posts, pictures or anything that would remind me of this day. I didn’t want to have the memory of my daughter hooked up to machines. I wanted to put the whole day behind us before it even started. 

The day of the appointment came and I was just a ball of nerves. I couldn’t eat and I couldn’t stop staring at my baby. Thankfully she did wonderfully during her sweat test and only cried once. Me on the other hand I can’t tell you how many times I cried. I had a looming cloud of darkness called cystic fibrosis.

While we were waiting for the results I do remember I had to run off to the bathroom to pump because I was too nervous to ask for a nursing room. In the bathroom I was just a mess. I was awkward because of pumping on a toilet and just overall worried about the diagnosis.

After pumping we had to meet with a geneticists to discuss the results. I was shaking walking down the hallway. I was worried the worst was going to happen. I couldn’t help but to run through all of the scenarios in my mind. My husband kept reassuring me that she was fine but he wasn’t even believing it himself.

Cystic Fibrosis Forever Changing our Lives

We were brought into a little room with a woman I could’ve sworn I knew and she told us all about our little girl. Thankfully she started the meeting by telling us she didn’t have cystic fibrosis. I couldn’t be more relieved. She did go on to explain that she was a cystic fibrosis carrier.

Even though I am beyond happy that my baby girl is healthy, cystic fibrosis will always be a part of our lives. When Tinley goes to have children there could be a possibility that she could have a child with cystic fibrosis. I would hate for her to go through the same pain we went through but at least we can comfort her with our own experience and be there for her.

We are now lifelong supporter of cystic fibrosis and if you would like to donate towards finding a cure you can HERE.

I would love to hear from other parents that have also been through cystic fibrosis testing and what your connection is with the condition.

7 thoughts on “The Hardest Day as a Parent-My connection to Cystic Fibrosis

  1. What a relief to find out she does not have it! I’m sure a lot of other parents will be encouraged by your support, because without situations like these a lot of diseases get overlooked.

  2. That Is so terifiying omg , My heart just cracked 🙁 I’m glad that she okay ,and toots to you for trying to raise awareness about this condition <3

  3. That is so sad, but happy that she doesn’t have cystic fibrosis herself! She is beautiful, thank you for bringing awareness to this scary condition!

  4. I never knew anything about CF either until my cousin had a baby with CF 21 years ago, I was tested and found out that I am a carrier. My husband was tested before I went through IVF and he is not a carrier.

    I am assuming that my triplets (yes, I had triplets) are not carriers as I was never told otherwise.

    1. It is tested when they are first born, so if they didn’t come back you should be good. Neither one of us knew we were carriers and we still don’t know which one is but I don’t think we are going to have any more babies it’s just we have to be aware when she has kids or my husband’s sister.

  5. I know the pain of having a new diagosnes I share my own personal first hand experiences when I mentor other parents who have children with a rare genetic disorder called 22q11.2 deletion syndrome. I can relate to you and all you shared in the scary unknowns about the future.
    I look forward to seeing more blog post from you in the tuture

    1. Yes we are in the clear for now but the future holds so many scary possibilities
      .

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