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 aspects 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. 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 Cystic Fibrosis Queensland member.
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 Advisory 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 psychosocial in nature to help you and your family best support your newest member.
For further resources and to find out more about supporting your child in the early stages of development, visit www.cfqld.org.au/support-services