The First Year
My name is Penny and my husband Matt and I have three beautiful daughters aged ten, seven and two. Our seven year old daughter, Julia, has Cystic Fibrosis. This is our story of living through the first year of having a CF child.
Our story is a little different to most as Julia was diagnosed at age six, a lot later than most diagnoses that occur in the first year of life. When Julia was 6 weeks old, our pediatrician, told us Julia had a positive result on her Guthrie’s test for CF and needed a sweat test. Julia had a sweat test straight away and another at six months of age; both tests were negative and we were grateful to have a beautiful, healthy baby. Julia’s growth was quite normal, but she developed a cough that persisted from around the four month mark. She would be prescribed antibiotics which usually cleared it up, but it always returned within weeks. She did all the normal things other kids do, reached all her milestones on time and CF never really came up again for a couple of years.
Fast forward to age three. Julia has a terrible cough, is very lethargic and loses a lot of weight. She is diagnosed with pneumonia and admitted to our local hospital. Treatment is unsuccessful and after a few days she is transferred to Sydney Children’s Hospital. The ambulance trip seemed to take forever and she was at the hospital another week before pseudomonas and MRSA were discovered on her lungs. The doctors were puzzled how a non CF child could be so sick with these bugs. With treatment she finally improves and after three weeks we return home. Julia has chest percussion and tobramycin on and off for over a year to fight the infections that keep coming. Later that year we have another admission for IV antibiotics for 10 days. She also continues seeing a respiratory specialist.
In the next three years Julia does all the normal things that kids do. She attends pre-school, then school and is in year one when she gets referred to another specialist who sends her for another sweat test just to cross every “T” he says. When the phone rings later that day and the doctor tells me it’s CF, I am absolutely gutted. I am so shocked, but not really surprised if that somehow makes sense. It was my worst nightmare come true. Julia had not been really well for so long, and now this. I couldn’t believe life was so unfair to a little girl. How was I going to tell my husband, my daughters and Julia herself? We had even had genetic testing years before and I had been found to be a carrier but Matt wasn’t. (Later we have found out he has a rare mutation of the CF Gene). I just couldn’t understand.
I saw the CF team the next day. That was also a blur, I was a mess and because I already knew a lot about CF, I don’t think I listened as well as I should have. I was already thinking Julia’s future was limited and I had never felt so alone, so out of control and so ripped off.
Julia was admitted for her first tune up. She must have seen every medical practitioner the hospital had to offer and had every drug pumped into her, or so it seemed. The CF team was so positive that they could make Julia much healthier. I held onto that hope tightly through her bronchoscopy, through the entire physio and drug therapy and the fact that her epilepsy that was supposedly outgrown had re-surfaced. Yes, I thought, it just keeps coming.
I did lose a bit of faith when Julia had to be re-admitted eight weeks later. The loneliness of hospital tends to play on my mind and I have too much time to think; but the team’s promise came true. Julia really improved and today, eight months later, she is a different girl.
I am amazed at how far we have all come. Some CF hurdles are harder than others. Most of all, it has been hard to accept the help that has been offered, but CFNSW and the CF team have been wonderful with practical and educational help, even when I have yelled and cried and talked incessantly. I am hoping the strength we have gained in the good times can sustain us in any difficult times that may lie ahead.
As for Julia, she has a wonderful strength of character that has seen her through her challenges. She takes it all in her stride. We have our battles over physio, exercise and medication, but the benefits outweigh the arguments.
As a family, we are grateful to Dr Andrew Numa for diagnosing Julia and changing our lives for the better. We thank CFNSW and Julia’s CF team for all their help in helping us get to this point in our lives and helping us move forward. But most of all I thank God for giving me Julia just as she is and for the privilege of being her mum. I am proud to be part of her journey, which has only just begun.
