Shelby Dimel

Early on in my pregnancy when we did genetic testing I never in a million years thought anything would come of it. But when I got the phone call that I was a carrier for Cystic fibrosis, I’m not gonna lie I was nervous. Then when Alex got tested and we found out he was as well. My nerves went even higher. I didn’t know much about the disease, and when your doctors tell you NOT to Google something….listen. Because I didn’t. And I found myself sobbing because I thought I would outlive my kid. Because the internet isn’t up to date. 

We watched her closely through my pregnancy because she was showing an echogenic bowel on ultrasounds which can be a sign of CF. At my 37 week appointment her bowel had gotten worse. And they suspected Meconium Ileus and Jejunal Atresia were the issue. So I had a C-section that Monday.

For the first two days of Gabbys life, she was unable to pass the meconium (an infants first bowel movement). The doctors at Children’s tried many enemas and x-rays they determined that she had Meconium Ileus and Jejunal Atresia, both conditions that share a connection with CF and this cause her bowel to twist which was keeping the meconium from passing. At just 2 days old, she needed surgery to remove the twist and “dead” portion of her bowel and then re-sect it. Luckily it wasn’t too much. She came out of surgery with a stoma and mucus fistula (an ostomy).

Due to all of this Gabby would be in the Nationwide Children’s hospital NICU for 64 days. In February of 2023 (2 weeks before her scheduled take down - where they reconnect her bowel) her stoma prolapsed (meaning a piece of her intestine pushed out through the stoma). After  a day or two of this occurring in order to make sure no further complications arrised her take down was rescheduled for February 19,2023. That surgery went very well. However, her belly was still distended a few days after surgery. They had to go in a third time and fix a small hole in her bowel. After that we were on our road to home!

We came home March 13,2023. However during our stay we learned about so many things that are now part of Gabby’s every day routine. Enzymes to help with digestion and absorption of nutrients from all the things she eats. Airway clearance, inhaled medications. Worrying about growth and gaining weight. It was all new and scary.

I will say we’ve been blessed. Since being home she has grown so well. And we’ve only been hospitalized once for a bowel clean out.

We’re often told if we didn’t tell anyone no one would know she has CF. And that’s true. But it’s still there. And thanks to modulators like Trikafta (which gabby can take a 2), she can hopefully live her life as if she doesn’t have CF (hopefully).

Cystic Fibrosis is a progressive disease, which means that it will only get worse as she grows. This is why it is so important for awareness to be spread and money to be raised. The CF foundation gets no government funding, so all of the money it receives is from fundraisers and events like Great Strides! These funds go directly toward research for things like treatment therapies and drug development that benefit people living with this life threatening disease and also, more importantly, these funds pave the way for a cure to be found.

So again this year. I’m asking for donations and support. If you can’t donate please share. Every little bit helps.