Newborns

Congratulations on the birth of your new baby. Having a baby diagnosed with CF can be overwhelming. 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:

• Home support including:
  • Practical support, short term cleaning and respite
  • Assistance with physio and routines
  • Parenting and family support
• Social work and mental health support
• Peer connection
• Financial support
• Resources & information

Read our Newly Diagnosed Services 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). Our Information for New Parents booklet provides a range of information about caring for a baby with CF.

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 weight gain (if required)
• Antibiotics to prevent or treat infections

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 your child is in a good routine. For some babies this might take longer and that’s ok. With babies, there are always good days and bad 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, including this section on physio for infants to 2 years. Contact our Services team for further support with developing routines.

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.

CF Clinical Team

You can contact the CF clinical team with any queries or problems, any worries about medications or changes in treatment.

• Monday – Friday, 8am to 4pm
• Phone: 6456 0217
• Email: PCH.CF@health.wa.gov.au

Further contact details can be found here.

Hospital

Some babies 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 baby’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.

We also have our My First Admission videos (please note that some of the information will be outdated since the opening of the new children’s hospital).

CFWA Support

CFWA can provide support during hospital admissions including:

• An inpatient Hospital Bag with age appropriate items and snacks for parents, delivered by a member of the CFWA services team. Contact us to arrange.
• Travel subsidy for hospital appointments and admissions.
• General support- please get in touch with any concerns or requests for further support.

Useful External Resources

• Coming to Stay in Hospital (PCH)
• At the Hospital: Helping My Child Cope (KKIND)
• Infant Positioning: Promoting Comfort (Comfort Kids)
• KKIND Service at PCH

Airway Clearance

Airway clearance is needed to remove thick sticky mucus from the lungs to prevent lung damage. It is usually started as soon as your baby is diagnosed with CF and continues twice a day. Practicing daily airway clearance from diagnosis creates a good routine and develops the skills necessary for use when signs of infection are present.

Airway clearance for infants may include:

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.

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. Our CSWs receive intensive training by CFWA’s Services Team to provide them with the skills and knowledge they need to support you.

The Digestive System & Nutrition

Many babies born with CF have issues with their digestive system. In approximately 90% of babies with CF, the pancreas does not work properly, making it difficult to digest food and gain weight. If this is the case for your baby, enzyme supplements will be prescribed to help them absorb the calories and nutrients from their food. Babies with CF may also experience other issues with their digestive system including meconium ileus and reflux.

We cover all these topics and more on our Nutrition for Infants page.

Medications & Procedures

Children with CF may be on a number of different medications. Common medications include enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins.

For more detailed information about CF medications and procedures, check out our factsheets:

Infection Prevention & Control

People living with CF are at greater risk of getting lung infections than those who don’t have the condition. That’s because the thick, sticky mucus in the lungs can make a great place for germs to thrive and multiply. Fortunately, there are 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.

See our factsheets for information on common germs and how best to minimise risk:

Useful External Resources

• Children Medically at Risk & Immunisations (PCH)

Emotional Wellbeing

Dealing with the diagnosis of CF in your baby can be difficult, and can affect your mental health. If you or your partner are struggling, our psychosocial team can provide support and links to further support as needed.

CF Parent Connect Playgroup

CF Parents Connect is an online playgroup and support group for parents of children with CF aged 0-5 years. The program hopes to create connection, friendship and a safe place to talk about all things parenting and beyond.

Facilitated by Mel (paediatric OT/child and family therapist) and Vic (social worker), our goal is to provide a space that is positive, supportive, informative and collaborative. New participants are welcome at any time.

Day Care

Many children 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

Our CFSmart education program is a free resource for educators to improve understanding of CF. It includes free eLearning modules as well as downloadable resources. Our Education Coordinator can work with parents to develop a day care Action Plan with information about the needs of your baby at day care. We are able to provide further support and education to the centre if required.

Summer and CF

During the summer months, there are some important considerations to take in to account for your baby’s health. We have developed the following factsheet which talks about dehydration, sun sensitivity, allergies, loss of appetite, effects of heat on medications, water play considerations and bush fire risks to lung health.

We also have a factsheet with information about travelling with a child with CF.