Cystic Fibrosis: Evelyn's Story
Patient Story Highlights
- Evelyn’s family learned she had cystic fibrosis when she was just 2 weeks old, and she began receiving care from Johns Hopkins All Children’s Hospital.
- One of the benefits of being a CF patient at the hospital is that it offers an accredited Cystic Fibrosis Center with dedicated CF physicians and a full team trained for quick response, education and full-service high-quality treatment for CF patients.
- The highest level of care, a loving staff, access to cutting-edge research and treatment options are all part of the CF Center at Johns Hopkins All Children’s Hospital.
From almost the moment she was born, little Evelyn showed signs she was facing health issues. Her weight was dropping and she had spent her first five days in the neonatal intensive care unit at a Tampa hospital.
“I found out I was a carrier for cystic fibrosis during the pregnancy,” Carolann, Evelyn’s mom, recalls. But Carolann already had a healthy son, so she wasn’t very alarmed. She didn’t know anything about cystic fibrosis (CF) anyway.
It wasn’t until she received a call from Johns Hopkins All Children’s Hospital when Evelyn was 2 weeks old to come in right away to discuss her newborn screening results, which the hospital automatically receives, that she panicked. “I immediately started crying, but I told myself to hold it together,” Carolann says. “It was probably one of the worst days of my life. There was so much information to absorb, and I couldn’t accept that something was wrong with my precious baby girl.”
“A CF diagnosis is always, always going to be difficult for the parents to hear, but in reality, finding this information out during newborn screening is much better for the child,” explains Deanna Green, M.D., medical director of the cystic fibrosis program. “We can intervene with better weight management and avoid failure to thrive in newborns. In fact, we have improved our nutritional scores maintaining weight above the 50th percentile for all of our patients,” Green explains.
“Evelyn was diagnosed the day her newborn screen package arrived at Johns Hopkins All Children’s at just 2 weeks old,” explains newborn screening coordinator, Jean Polasky, R.N. “The family was able to immediately meet with a pulmonologist and our CF dietitian, Jennifer Blair, who began education on how to best provide nutrition to Evelyn. In the past, this journey to diagnoses and treatment could be delayed for months. Thanks to the Florida Newborn Screening program, babies like Evelyn are receiving high-quality care sooner, and we are thrilled to be able to offer this to our patients."
The Right Place at the Right Time
One of the benefits of being a CF patient at the hospital is that it offers an accredited Cystic Fibrosis Center with dedicated CF physicians and a full team trained for quick response, education and full-service high-quality treatment for CF patients.
“We are able to immediately begin educating parents like Carolann and David, which can be overwhelming, but it allows us to begin a program for the infant and get them on the right path from the start,” Green says. “It is actually a very unique service that we offer through our newborn screening coordinator and a nurse coordinator in our pulmonary department. Not every hospital has this ability to offer this high level of care right from the start.”
It isn’t the only cutting-edge benefit.
The CF Center at Johns Hopkins All Children’s is a CF Foundation-designated Therapeutic Development Center, which is the national research network for cystic fibrosis. “With that designation, we have access to research studies that lead to breakthrough therapies such as recent modulator drugs that help improve lung function, weight and survival of our patients,” Green explains. “This is a stepping stone to providing true gene therapy, which will alter the genetic code. Patients have access to these types of research studies, which lead to breakthrough therapies like this one. It’s a wonderful thing for our patients to benefit from.”
The CF Center is currently involved in eight of its own research studies with direct clinical care for patients in the Therapeutic Development Center. The hospital cares for the largest number of CF patients in west-central Florida, offering outpatient clinics in North Tampa and Sarasota to better serve those areas. Several grants have allowed the program to provide a mental health counselor and improved physical therapy access, allowing for cutting-edge therapy for all of the hospital’s CF patients.
“From the beginning, we loved the staff at Johns Hopkins All Children’s,” Carolann says. “We thought that we wanted something closer to home as Johns Hopkins All Children’s was about an hour away from us, but when we started going once a month and we got familiar with the team, I didn’t want to switch. I would make that drive just so that I knew my baby was in good hands. The CF team here is amazing and treats us just like family.”
Carolann explains that the staff wants to know what is going on not with just Evelyn but with the family. “They take the time and explain everything in a way that we would understand,” she says. “They treat her like she is their own daughter and that feeling is amazing. To know that they care and can support us in these hard times is wonderful. I am and will be forever grateful for this team.”
The highest level of care, a loving staff, access to cutting-edge research and treatment options are all part of the CF Center at Johns Hopkins All Children’s Hospital. Call our Pulmonology and Cystic Fibrosis program at 727-767-4146 today.