Congratulations on the birth of your new baby. Having a baby diagnosed with CF can feel overwhelming, however CFWA is here to support you and your family with a range of services as outlined below. Please get in touch with our Services team via email services@cfwa.org.au or on 08 6224 4100 if you would like to know more about our services and support.
Alternatively, join our community here, and we will be in touch.
Newly Diagnosed Services
At CFWA, we have a range of services to support the entire family following the diagnosis of CF:
- In home support including short term cleaning, respite and other practical supports
- Assistance with physio and developing routines
- Parenting and family support
- Psychosocial support for parents and siblings
- Peer connection with other parents
- Financial support
- Resources & information
Read our Services for Families Flyer for more information.
Managing CF
There are many different treatments for CF, and each baby will have their own individualised plan from the team at Perth Children’s Hospital (PCH).
Treatment may include:
- Airway clearance, or chest physiotherapy, to help clear mucus from the lungs
- Salt and vitamin supplements
- Enzymes to assist your baby with digestion (if required)
- Antibiotics to prevent or treat infections
Our Information for New Parents booklet provides a range of information about caring for a baby with CF. You can also read more below about the management of CF in infants.
Clinic & Hospital
Clinic
Managing CF requires regular appointments with the specialised CF team at PCH. At first, appointments will be frequent, but as you gain confidence in your child’s CF care, and you both settle into a good routine, the frequency of appointments will ease.
Routine reviews are conducted three monthly, and you will also attend an annual review each year, however, if your child is unwell, you may need to be seen more often. The CF team have put together this Monitoring Children with CF factsheet which details the routine and annual reviews that families can expect.
You can contact the CF clinical team with any questions or health changes.
- Monday – Friday, 8am to 4pm
- Phone: 6456 0217
- Email: PCH.CF@health.wa.gov.au
Further contact details can be found here.
Hospital
Most children with CF will require a hospital admission at some stage. Although it may seem overwhelming, hospital admissions are essential to your child’s health and can deliver significant benefits.
If you are preparing for your child’s first hospital admission, you might like to read the following resources. The Managing Procedures factsheet has some great tips on helping to comfort babies during a hospital admission.
CFWA Hospital Support
CFWA can provide support during hospital admissions including:
- An inpatient Hospital Bag with age-appropriate activities and items delivered by a member of the CFWA services team. Click here to order.
- Travel & Parking Subsidy for people in financial need for hospital appointments and admissions.
- General support- please get in touch with any concerns or requests for further support.
Airway Clearance
Airway clearance is a daily treatment needed to help keep lungs healthy. It helps loosen and move thick, sticky mucus out of your baby’s lungs. Treatments are usually started as soon as your baby is diagnosed with CF and continue twice a day, even when your child seems well, because they help prevent mucus from building up over time. During coughs, colds or infections, airway clearance may need to happen more often.
In infants, airway clearance may include gentle positioning and percussion and baby PEP. With young babies, physio will even include active play. Activities such as bouncing on a ball or on your lap, rolling, tickling and belly laughing are all things you can do with your baby from a young age. As your baby grows, more activities can be introduced. You will be directed and supported with physio by the PCH physiotherapist, and they will teach you how to perform airway clearance at home.
Read more information about airway clearance for infants:
Community Support Worker Program
In WA we have a Community Support Worker (CSW) program, which enables you to receive regular home visits to support you and your baby with airway clearance and other home supports. Our CSWs receive intensive training by CFWA’s Services Team to provide them with the skills and knowledge they need to support you. This service can be accessed by referral from your CF team or self-referral.
Developing a Routine
It is really important to set up a routine with your baby as early as possible. It’s easier to keep on top of treatments when you’re in a good routine. For some babies this might take longer and that’s ok. With babies, there are always easier and harder days, and if you have a bad day with treatments, it’s ok. Tomorrow is a new day to start fresh. Developing a good routine will become easier as your baby grows and you become more comfortable with treatments.
CF Physio 4 Kids have great resources for parents and carers, including this section on physio for infants to 2 years.
Nutrition & Digestion
Normal growth and development are the main nutritional goals for your baby. The team at PCH will closely monitor your baby’s weight and growth at clinic visits and the dietitian will provide tools and strategies aimed at keeping your baby at an optimal nutritional status. They may ask questions about feeding patterns, digestive symptoms, appetite, salt, enzymes and vitamins, which are all part of the nutrition picture. More information is available on our Nutrition for Infants page.
Medications
Babies with CF may be on a number of different medications. Common medications include enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins.
Read more about CF medications for infants:
Infection Prevention
Infection prevention and control is an important part of everyday life for a family managing CF. This is because thick, sticky mucus in the lungs of a baby with CF can trap germs more easily and make a great place for germs to thrive and multiply. The goal of infection prevention is not to keep your baby in a “bubble”, but rather about reducing unnecessary exposure to germs and building simple habits that help protect their lungs over time.
There are simple steps that families and caregivers can take to minimise the risk of passing on germs to a baby with CF, including good hand hygiene, avoiding people who are unwell and following the National Immunisation Program.
Cross Infection
As your child grows, you may also hear about cross infection. This refers to germs that can spread between people with CF. Some bacteria can be particularly harmful to others with CF, which is why people with CF should avoid close contact with each other. This is well managed in clinic and hospital settings.
It can feel overwhelming at first, especially with a new baby, but your CF team will help guide you and focus on practical, realistic ways to keep your baby healthy while still enjoying family life, play, childcare and social connection.
We have more information on common germs and how best to minimise risk in our Infection Control factsheets.
Emotional Wellbeing
Dealing with the diagnosis of CF in your baby can be difficult and can lead to feelings of anxiety and/or depression. It’s important to acknowledge these feelings and reach out to your GP if mental health challenges persist. Our services team can also provide support and referrals to further support as needed.
Parents & Carers Connect Playgroup
We also run an online Parents & Carers Connect Playgroup for parents of children with CF aged 0-4 years. The program is facilitated by our services team and offers connection, friendship, and a safe space to talk about all things CF, parenting and beyond. New participants are welcome at any time.
Day Care
Many babies with CF go to day care and this is something that can be well managed with a supportive centre. If you are sending your baby to day care at some stage, you might like to read our factsheet with tips on choosing a centre, educating staff, infection control and more.
Day Care Education
We can assist by providing the day care with CF education and a formal CF Action Plan specific to your baby’s needs at day care. Our online CFSmart education program also offers free eLearning modules for day care educators as well as downloadable resources.
Summer & Travel
During the summer months, there are some important considerations to take into account for your baby’s health. The following factsheets talk about travel considerations, dehydration, sun sensitivity, allergies, effects of heat on medications, water play considerations and bush fire risks to lung health.