Ten years ago, Doernbecher patient Chehayla Hyatt was diagnosed with Cystic Fibrosis. Over the years, Chehayla and her family have dedicated their efforts to raising awareness about CF and its impact on patients and families. Below, Chehayla’s mom, Brianne, shares their powerful story.
What is Cystic Fibrosis? Cystic Fibrosis, or CF as it’s often known, is caused by a defect in the CFTR gene. In people with CF, this gene causes a thick build-up of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Learn more about CF here.
Our daughter Chehayla was diagnosed with Cystic Fibrosis when she was 10 months old. At her first Cystic Fibrosis Clinic appointment at OHSU Doernbecher Children’s Hospital, we were given a handout about the Cystic Fibrosis Foundation (CFF). It explained that the CFF was responsible for raising funds to create new therapies to sustain the lives of those living with Cystic Fibrosis. Shortly after Chehayla’s diagnosis, I had the feeling that I needed to do something – I couldn’t just sit around waiting for others to help save my child. I called the Cystic Fibrosis Foundation and asked how I could get involved. Since that day our family has been supporting the Cystic Fibrosis Foundation in raising awareness and donations.
This summer Chehayla’s sister, Talon, was asked to represent Oregon at the Cystic Fibrosis Foundation’s Teen Advocacy Day in Washington, D.C. While in D.C., Talon met with Sen. Jeff Merkley and legislative assistants of Reps. Kurt Schrader, Peter DeFazio and Earl Blumenauer.
Talon spoke with them about what life is like for her and what it’s like having her sister constantly in the hospital because of CF. She talked about how lonely her room is and how hard it is to focus in school when her sister is gone. She told them about how Chehayla has been admitted to OHSU Doernbecher 17 times in the last seven years. She told them about how at just 9 years old, her sister’s veins have become useless for administering IV medication.
After bringing the room to the brink of tears, Talon then asked them to join the Senate Cystic Fibrosis Caucus and the House of Representatives’ Congressional Cystic Fibrosis Caucus to support funding for the NIH and FDA. She pleaded for them to join our efforts in improving the lives of all those in our CF community. In that meeting Senator Merkley agreed to join the Senate CF Caucus and a few weeks later we learned that Representative Blumenauer joined the House CF Caucus.
Our advocacy for Cystic Fibrosis extends beyond our support of and work with the CF Foundation. When Chehayla is admitted to OHSU Doernbecher, we’re there anywhere from two weeks to a month at a time. I like to think of ourselves as Doernbecher residents. It truly has become our home away from home.
Since we are there so much, I’ve found that I have a unique perspective. A few years ago I joined the Cystic Fibrosis Family Advisory Council at OHSU Doernbecher. Our time at “Club D” (our nickname for Doernbecher) has proven to be very useful in advocating for changes. The Family Council has been working closely with the Unit Nurse Management to implement various changes to improve the inpatient experience for other families with CF.
No parent wants their child to be sick or have to spend time in the hospital, but we are so grateful that we have Doernbecher. Our CF Care team always takes our concerns into consideration and we make decisions for Chehayla’s health as a team. If I had to say what it is about OHSU Doernbecher Children’s Hospital that makes it so great, I’d say it’s the people. Our care team, the nursing staff, Child Life, administrative support, RSAs, housekeeping – they are all such friendly, caring people. They’re what make Doernbecher great!
CF families: Did you know that there’s a Cystic Fibrosis Family Support Group at OHSU Doernbecher? It’s held the second Thursday of every month. If interested or if you have questions, please email firstname.lastname@example.org or call (503) 494-8023. Note: Due to infection control guidelines, patients with CF cannot attend.