Piper

Just like any other baby girl, Piper from Redland Bay underwent a routine newborn screening test shortly after she was born in March 2014. When Piper’s mum, Liz, took the phone call to hear the results of that test, the last thing she expected to hear was that Piper had been diagnosed with Cystic Fibrosis (CF).

“Piper was only six weeks old. We were so shocked – we had no family history of CF, and we had no idea what this would mean for her and her life,” Liz said.

Following that first phone call, things moved very quickly for Piper and her family. Piper was put on Creon’s – enzymes which replace the ones her pancreas doesn’t produce – and daily physiotherapy. Her first hospitalisation came when she was nine months old, for a bronchoscopy – a procedure that allows doctors to look at the lungs and air passages – and a PICC line insertion, which is an intravenous line from her elbow that allows antibiotics to be given for a longer period of time.

“We spent a week in the hospital after this for intensive physiotherapy and IV treatment, which was very scary and confronting because we realised that this was just the first of many admissions,” Liz said.

Piper returned to the hospital six months later with appendicitis, so she had her appendix removed, and underwent another bronchoscopy and PICC line insertion, as Liz recalls she had been unwell with a persistent cough for quite some time. It was after this visit that Piper was sent home with an infuser bottle for her medication – which Liz cites as “undoubtedly the best invention ever when you have a chronically ill child” – as part of CHQ at Home’s Hospital in the Home (HITH) service.

“Being able to go home, sleep in our own beds, and be in our own environment while continuing treatment was amazing. This treatment included two sessions of physio per day – which were done at home – and a nurse would visit to change Piper’s infuser and administer more IV antibiotics,” Liz said.

Since then, Piper has had three more hospital admissions, and her and her family have been able to return home after just one week because of HITH.

“Having a sick child and being stuck in hospital can be exhausting, and hard to organise. HITH makes life with a sick little one so much easier. It’s so easy to manage, and it’s wonderful to be able to be at home and still have your child cared for by amazing people,” Liz said.

Four years on from her diagnosis, Piper is an active, cheeky and chatty child, who Liz describes as a pocket rocket.

“She loves riding on her scooter, bike and playing on her trampoline. When the weather doesn’t allow for outside play, we do her physio by holding dance parties in the lounge room.”

So, what advice does Liz have for other families who may have recently received a cystic fibrosis diagnosis?

“There is amazing support out there, and you’re never alone. We knew so little about cystic fibrosis at Piper’s diagnosis, and sometimes the future seems uncertain and scary, but we are lucky enough to have a great support structure from our friends to our family to our HITH team. Take everything one day at a time, and make the most of every minute… Piper certainly does.”