Tracey and Fiona have a beautiful daughter Evie, born via IVF in 2018. Tracey shares some of their experiences about the shock diagnosis, and how…
First of all, congratulations on the birth of your new baby. Having a baby diagnosed with cystic fibrosis (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 Cystic Fibrosis WA (CFWA) services and resources, your child’s CF hospital clinic team as well as the CF community.
Due to confidentiality reasons, CFWA are not notified when a new baby with CF is diagnosed. Please get in touch with our Services Manager Kathryn via email or on 08 6457 7333 if you would like to know more about our services and support. Alternatively, sign up to be a member here and we will be in touch.
Our ‘New Diagnosis Information for Parents’ booklet is a great place to start your CF education journey.
If you would like to hear stories from other parents about their newborn experience and dealing with a CF diagnosis, click here.
Newly Diagnosed Services
At CFWA, we have a range of services to support the entire family following the diagnosis of CF. This may include community nursing or physiotherapy support, social work and counselling services. We also have a range of information resources, a home care worker program to help establish a routine with physiotherapy, family education, nebuliser gifting program in consultation with Perth Children’s Hospital (PCH) and much more available. Support is available via phone, email or in the comfort of your own home.
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 PCH soon after your child’s diagnosis. It contains information about CF and the services we provide here at CFWA. It also includes:
- A free CFWA membership form. You can also sign up online here.
- Contact details for our Services Team
- Information on subsidies and financial assistance
- Useful baby items
If you never received a Newly Diagnosed pack, you can request one by contacting our Services Manager via email or phoning 08 6457 7333.
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. Go to www.cysticfibrosisbabysteps.org.au
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 for CF may include the following:
- Antibiotics to prevent or treat infections
- 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)
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 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.
To read more articles and member stories about developing a routine, click here.
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.
Home Care Worker Program
In WA we have a Home Care Worker (HCW) program, which enables you to receive regular home visits to support you and your baby. Our HCWs 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 via email or on 08 6457 7333.
Diet plays a very important role in the management of CF, as a healthy body weight can be linked to better lung function. In approximately 85% 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. Your CF dietitian from PCH will advise you on the dosage of enzymes and how much and how often to feed your baby.
You may find our following resources helpful:
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, 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 builds up in the lungs, making 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 recommended immunisation schedule.
See our factsheets for information on common germs and how best to minimise risk:
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 social workers can provide support and links to further support as needed. We have a dedicated page for Parents and Other Carers, providing information, links to support services and sharing parent stories.
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 or experiencing anxiety around this, you might like to read the following resources. The Procedural Anxiety factsheet has some great tips on helping to comfort babies during procedures.
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:
- Providing a Hospital Care Pack with lots of useful and fun items for your child. Click on Home and Hospital Care for more information.
- Travel subsidy for regional families.
- General support. Please contact our Social Worker Kathryn via email.
Useful External Resources:
- Coming to Stay in Hospital (PCH)
- At the Hospital: Helping My Child Cope (KKIND)
- Infant Positioning: Promoting Comfort (Comfort Kids)
- CF & Mental Health: Managing Procedural Anxiety (CF Foundation)
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.
Our Education Coordinator is available to provide CF education to your child’s daycare educators. Contact her on firstname.lastname@example.org or phone 08 6457 7333.
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.