Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
“Every cough sends a shiver down my spine and every cold they catch puts such pressure on us as we wonder if it is doing any permanent damage to their little lungs.”
Dad Gerard describes the worry that comes with being a parent to two little girls with chronic respiratory problems.
During her first week of life, eight-year-old Isobel was classed as a “failure to thrive” when she began having bowel complications and was losing weight. Results from a Guthrie test revealed she had cystic fibrosis, a chronic, life-threatening disorder that affects the lungs and digestive system.
Gerard and his wife Christine spent the next four weeks trying to come to terms with this distressing diagnosis while their new born baby girl was cared for in Princess Margaret Hospital’s Neonatal Intensive Care Unit.
“With such an unknown start to Isobel’s life, there was never any certainty given about life expectancy but there was plenty of certainty around the risks,” Gerard explains.
Daily physiotherapy sessions would become part of their everyday routines, three monthly visits to Princess Margaret Hospital would be in place until adulthood and Isobel would have to take up to 28 tablets a day to keep her healthy.
When Christine fell pregnant again in 2007, doctors carried out an amneo sentithis test and confirmed prior to birth that their youngest daughter Ruby would also have cystic fibrosis. Receiving such devastating news for a second time ignited conflicting emotions for the couple.
“We were dealing with this pain, but at the same time we were swept away by how much love our beautiful girls were bringing into our lives”.
During hospital visits, bronchoscopes are used to examine Isobel and Ruby’s lungs and airways and nip any problems in the bud. Detecting any issues early is crucial because if the girls get chest infections, their lung function drops making it difficult for them to breathe. This can lead to coughing fits which cause headaches and hurt their throat, chest, and ribs. When the girls do pick up a bug, longer hospital stays are required, sometimes lasting for many weeks.
These unplanned hospital visits are particularly hard on Isobel and Ruby as it often involves days of intense physiotherapy, tests and visits from specialists. Despite this ordeal, mum Christine says the girls rarely complain and explains how the family all draw strength from each other.
“The girls’ older brothers Jackson and Angus are always able to put a smile on their little sisters’ faces when they are not feeling their best. They are beyond their years because of the experiences they’ve shared with Isi and Ru and I’m so proud of the way they look after their sisters and their Mum and Dad when they need it too,” Christine acknowledges.
Gerard describes how the family also regard the staff and facilities at Princess Margaret Hospital as an important part of their support network.
“All the staff are wonderful, they always take their time with the girls. You quickly learn you have to stand back and let the nurses build this trust with your little ones. They do whatever they can to make the girls’ stay as positive as possible, and if all else fails the promise of a visit to Stitches’ Megazone can work wonders.”
Christine and Gerard try to make life for all four of their children as normal as possible and even though they are all too aware of the risks that can impact life expectancy for people with cystic fibrosis, they are filled with incredible hope for the future.
“We are so thankful to know the girls’ health is being overseen by Dr. Stick and the Respiratory team and we are very fortunate to have access to the very best respiratory care in the world at Princess Margaret Hospital. Those that donate to the PMH Foundation really make a positive difference in contributing to research and revolutionary new technologies that can brighten the future of many young patients suffering from chronic illness.”
Outside of their treatment, the super sisters (as they call themselves), are outgoing little girls who love trips to the park, eating chocolate cake and spending too much time playing video games.