Newborns and 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.
Learning to manage life around the needs of a child with cystic fibrosis may seem overwhelming at first. But most parents soon establish a routine that allows them to enjoy time with their child and live their lives. Consistent routine and discipline can be a good way to ensure that your child feels secure. Whether for medications, physiotherapy or having treats, routine and discipline help teach your child self-control and, eventually, self-management of their condition.
Your child’s cystic fibrosis hospital clinic team will provide the best medical care available, while social workers and psychologists also help look after parents’ wellbeing.
Cystic Fibrosis Queensland provides support programs for the entire cystic fibrosis community. Parents receive newly-diagnosed packs and we’re also happy to speak to you about any concerns you may have. Please contact email@example.com or 07 3359 8000 to talk confidentially with our Services team.
The cystic fibrosis diet
It is more difficult for children with cystic fibrosis to absorb energy and nutrients from food, so their diet should compensate for this by being higher in kilojoules, fats and nutrients.
Digestive enzymes made by the pancreas help the body digest food by breaking down fats, proteins and carbohydrates. For many people with cystic fibrosis, mucus blocks the ducts that carry the enzymes from the pancreas to the digestive system.
People with this symptom need to take enzyme medications (such as Creon) to assist their digestion. For an infant, you can mix Creon granules in with purees and other soft food.
Physiotherapy exercises help clear the thick, sticky mucus that the body produces from the lungs and airways.
A cystic fibrosis physiotherapist will develop a physio treatment plan to suit your child. Many parents say that engaging their child in play or games is a great way to get them to do their physio and airway clearance exercises, for example bouncing on a trampoline or blowing bubbles.
Being physically active is also beneficial for maintaining lung function so encourage your child to take part in physical games, sports and other aerobic activities.
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 regular 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 produced 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 Newly Diagnosed 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
- The first 12 months handbook