Born May 3, 2011
Jessie birth was a pretty straight forward c-section. We had no idea at this joyous time she had Cystic Fibrosis.
In Australia, all babies are screened at birth for Cystic Fibrosis. Cystic Fibrosis is the most common life threatening, recessive genetic condition affecting Australian children.
In Australia, one in 2,500 babies are born with CF, that’s one every four days.
Jessie was diagnosed at 5 weeks of age. The heel prick blood test is done around the sixth day after birth, Jessie returned a positive result for Cystic Fibrosis.
The gene involved in Cystic Fibrosis gives instructions for the cells to make a protein that controls the movement of salt in and out of the cells. In Jessie's case this fuction does not work. This gene is called CFTR. (Cystic Fibrosis Transmembrane Regulator)
She looks normal
While Jessie appears normal on the outside, there is a lot going on inside her tiny body.
Cystic fibrosis particularly affects the lungs and digestive system. Kids who have it are more vulnerable to repeated lung infections.
Jessie is also pancreatic insufficient, thick mucus blocks the channels that would normally carry important enzymes to the intestines to digest foods.
There are many aspects to the treatment of Cystic Fibrosis. this involves the advice and expertise of various professionals, such as respiratory specialists, child health doctors, specialist nurses, physiotherapists, dieticians, counsellors and psychologists as well as our primary healthcare team.
Regular checks and tests are required to monitor and keep track of Jessie's growth, development and well-being. We visit our Cystic Fibrosis clinic every 4-6 weeks but can be more frequent.
Regular visits will be for the rest of her life.
Jessie's annual review is a lot more invasive and comprehensive.
This incudes a bronchoscopy and CT scans.
A Bronchoscopy is a technique used to examine a patient's airways, including the larynx (voice box), trachea (main windpipe) and the bronchii (the windpipes within the lungs.) The procedure also includes a bronchoalveolar lavage (BAL), in which a small amount of saline is injected through the scope to flush out fluid and mucus from the airways so they can be suctioned and tested.
To keep Jessie as healthy as possible, there is a relentless daily routine we must adhere to.
The following list is a brief overview of commonly used treatments.
Twice-daily chest physiotherapy to help clear her airways. Twice-daily courses of antibiotics. Enzymes needed to digest food given with every meal, including snacks. Electrolyte supplements. Extra salt with all meals. Extra Fat with meals. More medication and treatments will be added as she gets older or as her condition changes.
Recovering from surgery, clearly confused.
Coming to pick Jessie up for her CT scan.
Not happy about going under.
Lung function tests for research purposes.
Preparing for a routine lung function test.
Jessie practising her lung function test.
Nurse inserting an IV drip.
Jessie's brother Jamie, patiently waiting.