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First of all, congratulations on the birth of your new baby. Having a baby diagnosed with CF can be difficult news to digest and you may have many questions, but it is important to know that you are not alone. There are many supports available to you and your family including our services and resources, your child’s CF team as well as the CF community.
Newly Diagnosed Services
At CFWA, we have a range of services to support the entire family following the diagnosis of CF.
- Physiotherapy and equipment support
- Occupational therapy for help with family routines
- Counselling and social work support
- Financial support and
- Peer support
View the flyer below to read more about our services for families with a new baby:
Newly Diagnosed Pack
We also provide a Newly Diagnosed Pack to each family following diagnosis. The pack will be presented to you by the Respiratory Team at Perth Children’s Hospital (PCH) soon after your child’s diagnosis. It includes:
- New Diagnosis Information for Families booklet
- Contact details for our Services Team
- Services for New Families flyer
- Useful baby items
If you never received a Newly Diagnosed pack, you can request one by contacting our Services Manager.
Baby Steps is a website developed by Cystic Fibrosis Community Care with a huge range of information for families with a newly diagnosed baby, including tips on raising a child with CF and emotions after diagnosis.
Get in Touch
Please get in touch with our Services Manager via email firstname.lastname@example.org or on 08 6224 4100 if you would like to know more about our services and support. Alternatively, register your information here, and we will be in touch.
There are many different treatments for CF, and each baby will have their own individualised plan from the team at PCH. Treatment for CF may include the following:
- 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. For some babies this might take longer and that’s ok. It’s easier to keep on top of treatments when your child is in a good routine.
With babies, there are always good days and bad days and if you have a bad day with treatments it’s ok and it’s important not to beat yourself up, but rather remember 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.
Support with Routines
- CFPhysio 4 Kids have a great resources for parents, including this section on physio for infants to 2 years.
- Contact our physio Sam on email@example.com or 08 6224 4100 if you would like more support with implementing a routine.
Clinic & Hospital
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 factsheet, Monitoring Children with CF, 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 or just someone to talk to.
- Monday – Friday, 8am to 4pm
- Phone: 6456 0217
- Email: PCH.CF@health.wa.gov.au
Further contact details can be found here.
Most 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 can provide support during hospital admissions including:
- An inpatient Hospital Bag with lots of age-appropriate, fun items delivered by a member of the CFWA services team.
- Hospital Snack Packs are available on the ward. Please ask a nurse to receive yours.
- 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 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. For more information about this service, contact our physiotherapist Sam via email firstname.lastname@example.org or on 08 6224 4100.
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
Having CF means your child will be on lots 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
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 Senior Therapist and Social Worker can provide support and links to further support as needed. Please contact Deidre on email@example.com or phone 08 6224 4100.
We have a dedicated page for Parents and Other Carers, providing information, links to support services and sharing parent stories.
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 daycare 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 teachers and early learning educators to improve understanding of CF in an education setting. It includes free e-Learning modules as well as downloadable resources. Our Education Coordinator can work with parents to develop an Action Plan with detailed information about the individual needs of your baby at day care. We are able to provide further support to the day care if required.
For more information or support, contact our Education Coordinator Sharon on firstname.lastname@example.org or 08 6224 4100.
Summer & 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.