Raising a Child with CF
Here you are with your beautiful baby, ready to embark on an amazing adventure. Parenting any new baby has its own challenges, and no doubt you’re wondering how you’ll tackle raising a child with cystic fibrosis.
So what now?
It’s important, right from the moment of birth, to focus on your baby and the unique and very special connection between you. Many parents of a child with CF say that enjoying the magic that your baby brings is what matters most.
But this doesn’t mean pampering and over-protecting your child. Wrapping them up in cotton wool because of CF might be instinctive, but your child needs to become strong and resilient – and so do you.
You are their first teacher and can model good behaviours from the start – in health management, healthy eating and exercise – which is good for them and for you. Enjoy your little person as you watch them grow, learn and play – and you’ll be helping them prepare to join the world beyond their home.
Click on Connecting to Your Child for tips on how to strengthen your parent/child bond.
Many parents of a child with CF say that enjoying the magic that your baby brings is what matters most
The healthy CF child
A healthy CF child? Describing a child with CF as ‘healthy’ might sound like a contradiction in terms, but you can do a lot to give your baby a great start.
It’s worth noting that, while there is plenty of parent-tested knowledge about cystic fibrosis, each child with CF (and their parents!) will respond differently and be affected differently, as the range and severity of symptoms varies from child to child. Adjusting to life with CF is a work in progress.
As your child gets older, you can help by teaching them to do their physio correctly, take their medicines, be active and enjoy exercise to relieve the common health issues associated with CF – blocked airways and an inefficient digestive system.
You can do a lot to give your baby a great start
Your child’s airways
Your child’s airways can become clogged up with thick, sticky mucus that can become infected and damage the lungs. The mucus needs to be cleared out every day using physiotherapy (airway clearance). You will be taught how to do this by a specially trained physiotherapist.
It’s not always easy for you or the baby to deal with the physio. Some parents can feel – wrongly – that they’re hurting their newborn baby, especially if the baby cries. But physio brings them a lot of relief and, if you incorporate the treatment into your family’s daily routine and make it fun, it will soon become part of your new normal.
Click on How CF Affects the Body for detailed information about the impact of CF on the airways.
If you incorporate the treatment into your family’s daily routine and make it fun, it will soon become part of your new normal
Give them additional enzymes with their food to replace the missing digestive juices so they can gain weight and stay healthy
Your child’s digestive system
All babies need the digestive juices (known as enzymes) that are produced in the pancreas for digesting food and absorbing nutrients they need grow normally. However in CF, sticky mucus can block the pancreas, which means these enzymes can’t get through.
If your baby is affected in this way (pancreatic insufficient), they may need additional enzymes. You need to give these with their food to replace the digestive juices and help them gain weight and stay healthy.
Click on How CF Affects the Body for detailed information about the impact of CF on the digestive system.
Problems feeding?
Ask your maternal and child health nurse or CF team if you’re having trouble managing your baby’s feeds. When you’re moving your baby onto solids or if you have a fussy eater, a dietitian can give you helpful advice and ideas.
Click on Managing Mealtime Behaviours for tips on handling eating problems.
The power of love – and fun
When your baby is newly diagnosed with CF, you’re tossed into a whole new world that includes taking on much of your baby’s treatment.
But take heart. You’ll have the support of your CF team and the experience of other parents to draw on.
Remind yourself that this is still the same beautiful happy baby you held in your arms before diagnosis. Most parents of a child with CF will tell you simply to enjoy your little one. Here, some of them share their tips and advice.
“Start the treatment process with fun and love – singing, reading a book, playing with a baby toy. Create a calm, pleasant routine – just like you do at bedtime. Ease into the treatment gently.” Lisa, mum of two
“Treatment time is the only time of the day that we allow our son to watch television. For him, it seems like a reward for doing his treatments. We put on his favourite show or pop in his favourite movie. It helps him sit still and keeps him distracted while getting his treatment.” – Kate, mum of 2.5-year-old
Click on Getting Support to find helpful parenting sites and useful information
Start the treatment process with fun and love – singing, reading a book, playing with a baby toy’ – Lisa, mum of two
Start a healthy habit
If physical activity becomes a habit when your baby is very young, it will continue as they grow.
The benefits of leading an active life are well known, and it’s especially true for your child because of the positive effects that exercise has on the lungs.
Although your newborn can’t run yet – or even walk! – you can involve them in gentle physical play on the floor or on a mat in the park. If physical activity becomes a habit when your baby is very young, it will continue as they grow. And the bonus is they’ll be taking part in normal school life and making friends!
