The first 12 months
Often when a baby is first diagnosed with cystic fibrosis, parents may never have previously heard of the condition. They are told to perform physiotherapy twice a day, there is a strict regime of drugs, a strict nutritional procedure, cross infection concerns with others with cystic fibrosis, among many other serious issues – this can often be an overwhelming and confusing time for families.
The joy of having a baby is a unique phenomenon. As parents you will share all the joys of the first smile, the first word, the first step, everything your baby does because this newest member of your family is a special gift. However, your baby will need special care and attention to live with the challenges of cystic fibrosis.
Every child with cystic fibrosis is different. Their condition varies in severity, affecting organs of the
body differently and demanding different treatment regimes. The serious aspect of the disorder cannot be denied. However, there is much cause for optimism. More progressive treatments and therapies have improved the quality of life along with the overall prognosis of those with cystic fibrosis.
It is important that right from birth, you do not allow cystic fibrosis to define and limit your child, rather to remember that they are a child who just happens to be living with cystic fibrosis. The team at Queensland Children’s Hospital, Cystic Fibrosis Queensland, and the members of the Community Advisory Committee, are always there to help you through the first 12 months.
Talk to someone
Despite one in 25 Australians carrying the cystic fibrosis dysfunctional gene, little is known about the disease in the wider community. If you would like to speak with another cystic fibrosis parent, or even a cystic fibrosis adult, about how they navigated and managed the early years of life, please contact firstname.lastname@example.org and you will be connected to a member of our Community Advisory Committee.
We are all stronger together and while your experience is unique to you, your personal story of strength, courage and hope might be just what someone else needed to hear. Alternatively, you might be looking for guidance. Join our quarterly forums with our Community Advisor Committee members to discuss your concerns and build your knowledge about: diet and meal planning, preparing for childcare and school, home physiotherapy and on-going infection control. These forums are non-clinical and must not be used to replace clinical advice. Rather they are psycho-social in nature to help you and your family best support your newest member.
In conjunction with Queensland Children’s Hospital, Cystic Fibrosis Queensland has produce a book for parents of newly diagnosed babies. You would have received a copy in the Cystic Fibrosis Queensland nappy bag provided to you by the cystic fibrosis clinic. You can read the resource online here or order a hard copy to be posted to you by emailing email@example.com with your request.
Regular clinical visits will become a normal event in the life of a cystic fibrosis child but like any new experience, can be overwhelming at first.
Your Cystic Fibrosis Queensland nappy bag is your go-to pack for your child’s clinical visits and we encourage you to use it to store your:
Cystic Fibrosis Queensland pill box
Nappy change mat
We would like to acknowledge the contribution to the first 12 months document from the Queensland Children's Hospital cystic fibrosis team.
With special thanks to: Ryan Black, Penny Mitchell, Megan Farquhar and Elizabeth Shevill
Thank you to the Vertex Circle of Care Grant 2020 for production and printing costs of our first 12 months web page and information booklet.
Queensland Children's Hospital - Parent Handouts
Additional resources created by the Occupational Therapy department at Queensland Children’s Hospital can be found here.