Looking after your baby

As CF can affect many different parts of the body in many different ways, your child may need to take a number of different medicines. 

Inhalers and nebulisers

Many medicines for CF are inhaled (breathed in), using an inhaler or nebuliser.

Inhalers are devices that are used to deliver medication to the lungs either as a dry powder or as a spray.

Nebulisers change liquid medication into a mist so they can be breathed into the lungs.

They are used daily to help open up their airways, treat infections, and help thin the mucus to clear the lungs and prevent infections.

Antibiotics

They might need to take antibiotics, to prevent, treat or control bacterial infections.

Modulators 

A newer type of medicines called CFTR (cystic fibrosis transmembrane conductance regulator) modulators are becoming increasingly available. You might hear them referred to as just ‘modulators’.

While conventional CF treatments target the symptoms of cystic fibrosis, these drugs tackle the underlying genetic faults that cause CF by helping to make the CFTR protein work effectively.

They do not cure the condition, so routine CF treatments are still needed. Currently, not everyone with CF is able to benefit from modulators – there are some age restrictions and some types of CF do not respond.

Your CF team will be able to explain whether modulators, and other medications, are suitable for your child.

Having good weight gain and nutrition is very important for babies with CF to stay healthy. Your baby may need to take pancreatic enzyme supplements (eg Creon®) with their milk feeds (and later with solid food). These replace the digestive juices which are blocked inside the pancreas in CF, so your baby can digest their food and milk. If their food and milk is not being properly digested, your baby is likely to have frequent loose, greasy stools in their nappy. 

Our leaflet Pancreatic insufficiency and nutrition in cystic fibrosis (babies) has information on giving enzymes to breast and bottle-fed babies.

After diagnosis, when the treatment started, I could see the slow improvements and I was happy with it.

– Fajana, mum to Khadijah, age 14 months

Sammy took a feed during the diagnosis and they gave him Creon® in the clinic. No other medication has been as dramatic as this. From the first day on Creon®, he seemed much more settled and comfortable after feeds. He'd had seven weeks of not being sustained by his feeding. Then at diagnosis, with the start of Creon®, it all changed, and feeds nurtured him. Made him comfortable, full and happy and able to sleep too. This was completely different to how he was before Creon®. The difference was huge.

– Juliette, mum to Sammy, age 9

Creon® comes from an animal source, specifically pigs. If this concerns you for religious, cultural, or lifestyle reasons, you might like to speak to your religious leader or appropriate organisation. At present there is no alternative.

Sometimes there are no alternatives to medicines containing animal-derived ingredients. The Vegan Society strongly recommends that people take medication that is prescribed to them.

– The Vegan Society

Your dietitian will be able to support you when the time comes to move your baby onto solid food (weaning). Some people with CF may need to eat more calories than someone without the condition. They may also need to take vitamin supplements. 

Learn more about weaning and CF

We have a series of leaflets on CF and nutrition, which give information on topics such as digestion and weaning.

CF can cause mucus to build up in the airways. This makes people with CF more likely to have airway infections which can damage the lungs.

To keep the airways clear of this mucus, chest physiotherapy exercises (also known as ‘airway clearance techniques’) will be recommended to you by a specialist physiotherapist in the CF team. Every baby and child will have their own personal physiotherapy programme and your physiotherapist will show you how to do this at home.

Parents have told us that it’s helpful to try to make physio fun and like a game, even from an early age; for example, you can bounce gently on an exercise ball while holding your newborn baby and supporting their head.

Doing physio with your baby can be tricky as they might cry, wriggle or not want to do it – your CF team can give you advice on things you can do to make it easier. Use toys like trampolines – children of all ages love to bounce! 

We have a series of leaflets on CF and physiotherapy, including Airway clearance for babies and young children and Bubble PEP.

Building physical activity into your life is important and has huge benefits. Being physically active is really good for your child’s lungs, and moving your body can help you look after your mental health and wellbeing too.

Children are more likely to be physically active if their parents are active, and talk positively about it. Fun family activities – a walk, playing at the park, playing football, riding scooters or bikes – will be good for you all, giving the whole family the opportunity to spend time together and bond. 

It’s natural for all parents to want to protect their baby and you may feel this more strongly because your baby has CF.

There are some bugs (such as some bacteria, fungi, and viruses) that can potentially harm the lungs of people with CF, and these are common in certain places such as damp environments, stagnant mud, hot tubs, and stables (because of horse manure).

There are also some bugs that people with CF may carry in their lungs which could be harmful to other people with CF. This is known as ‘cross-infection’. This is why people with CF are strongly recommended not to meet in person. This can be isolating for new parents. 

CF can feel quite lonely at times, having to explain things to friends and family, and it can be frustrating at times. But you know your little ones, and you do what’s best for your family.

– Holly, whose daughter Amelia, 2, has CF

Some parents have told us that, in the early days, they felt anxious about their little ones picking up infections. However, over time, they sometimes reconsidered what ‘risks’ are worth taking to enable them all to have a fulfilling family life. For most families, they can enjoy most things that other families can, sometimes with some adjustments.

It can be helpful to think about balancing a child's physical health needs with their thinking and reasoning, social, and emotional development. Your CF team will support and guide you in making these decisions.

Most children with CF can go to nursery or another early years setting, which can be good for their development and wellbeing. In this environment, they will pick up colds and coughs like all children do. Children with CF have normal immune systems and will fight off these viruses. They may, however, need extra antibiotics.

It’s important that your child has all the usual vaccinations offered by the NHS, including flu. Your GP or health visitor will let you know when these are coming up or you can visit the NHS website.