Zoe is 12 years old. She’s in grade six, and is excited about going to high school next year. She has two best friends and a little crazy dog called Sharla. She also has cystic fibrosis.
Cystic fibrosis (CF) is a genetic, incurable disease that primarily affects the lungs, but also affects the bowel, sweat glands, pancreas and liver. It is usually diagnosed in the first two months of life, often during the newborn screening process that babies undergo at birth.
“Zoe was diagnosed shortly after the standard heel prick test when she was born,” says Zoe’s mum Trish.
“We received a call from the Genetics department at the Royal Children’s Hospital (RCH) when she was four weeks old, to tell us the test had detected a possibility of CF. We went in for further tests and were told the next day that the CF diagnosis was confirmed,” Trish says.
What ensued shortly after diagnosis is what Trish calls an ‘amazing process’. It takes a multidisciplinary team to care for a patient with CF, and Zoe’s family was introduced to that team, and to the journey ahead, almost immediately. Trish said this provided the information and support they needed to tackle what was ahead, and to come to terms with Zoe’s diagnosis.
“We were in the hospital every day for one week to spend time with individual clinicians and members of the CF team. We were educated, trained and given plenty of opportunity to ask questions. It wasn’t a good time for us; we had to learn how to accept it and get on with life. The hospital helped us get through this with a lot of dignity,” Trish says.
Zoe became unwell at three months of age with bronchiolitis; a common chest infection in young children. However, having CF meant this came with complications and Zoe spent a number of weeks in hospital – some of this time was spent in the intensive care unit.
“Zoe’s condition at that time isn’t necessarily typical of CF patients. But it really put into perspective how serious things can get in a short period of time,” says Trish.
Since birth, Zoe has endured bouts of ill health including pneumonia, chest infections and bowel issues. She and her family continue in their routines; daily care, hospital visits every three months for ‘tune-ups’, physio and more. Zoe, taking it all in her stride, describes an average day in her life.
“As soon as I wake up, I do a nebuliser treatment, which helps me to cough and get rid of anything in my lungs. Then I have my breakfast and have eight tablets before going to school. At lunchtime I take enzymes and go out for lunch with my best friends. Sometimes I have a physio session during the school day, or sometimes my teacher’s aid just takes me out for some air. I take more tablets later in the day, and when I come home I do some homework or watch TV. Before dinner I do another nebuliser treatment and have some Ventolin. Then I get ready for bed; I have an overnight feed through a PEG tube, which goes straight into my stomach, so I connect that before I go to sleep.”
Zoe’s ongoing tune-ups occur every three months and are a combination of inpatient visits and care from the RCH Hospital in the Home (HITH) service. During these admissions, Zoe undergoes lung function tests, is given antibiotics, scans and physio sessions.
Outside of Zoe’s care regime, she most enjoys spending time with family and friends, and especially loves animals.
“I love my dog and my tank full of fish. I’d like to become a vet nurse or an animal photographer,” Zoe says.
May is cystic fibrosis awareness month, which culminates in a 65 Roses Day event to raise awareness of CF. Find out more at cysticfibrosis.org.au.