What is cystic fibrosis?

Cystic fibrosis (CF) is an inherited condition that mostly affects the lungs and digestive system. The severity of symptoms can vary between people. There are many factors that affect the health of someone living with CF. While CF can be treated, there is currently no cure.

People with CF make an abnormal amount of thick and sticky mucus in their lungs, digestive system and pancreas. This stops their organs from working properly. It can lead to repeated infections and damage to the lungs.

Due to improvements in diagnosis and treatment people with CF can now live into their 40s.

What causes cystic fibrosis?

CF is a genetic condition. It is a recessive condition. This means that two copies of the gene are needed for CF to show up. A faulty CF gene must be inherited from both parents for your baby to have the condition.

Carriers of the CF gene have one copy of the gene, but don’t have symptoms of CF. They live normal lives and often don’t know that they carry the faulty gene.

If both parents are carriers of the CF gene there is:

• a 1 in 4 chance that your baby will not have the gene
• a 1 in 4 chance that your baby will have CF
• a 2 in 4 chance that your baby will be a carrier of the CF gene

This stays the same for each pregnancy the couple has.

Most babies with CF are born to parents who did not know their children were at risk.

How do I know if my baby has cystic fibrosis?

Most people with cystic fibrosis are diagnosed at birth. A few people aren’t diagnosed until later in childhood or even in adult life.

What is the newborn heel prick test?

Parents of all newborn babies are offered a screening test known as the ‘heel prick’ test. This is a free blood test that looks at your baby’s chromosomes. It screens for several conditions, including CF. It can show whether your baby is likely to have CF. The test is usually done on day 3 or day 4 after birth.

If the result is positive, your baby will have a sweat test. This is done at about 6 weeks of age and will tell you if they have CF.

What are the symptoms of cystic fibrosis?

The heel prick test doesn’t detect CF in all babies that have it. You should see your doctor if your baby has:

• a wet cough
• slow weight gain
• frequent loose poos

What should I do if my baby has cystic fibrosis?

If you’ve just found out your baby has cystic fibrosis, you’ll need support as you handle the news.

It’s a good idea to find out as much as you can about CF. Cystic Fibrosis Australia supports families living with the condition.

How is cystic fibrosis treated?

Management of CF is lifelong.

People living with CF need daily treatment to manage the condition. This includes:

• physiotherapy to clear the lungs
• enzymes to help with digestion
• antibiotics to treat infections
• a special diet
• exercise

This can take hours each day and many families find it very stressful.

What help is available?

You can apply for various types of financial support. You might be able to get practical help through the National Disability Insurance Scheme.

You can also call Pregnancy, Birth, and Baby on 1800 882 436 for advice and emotional support.

What will happen in my next pregnancy?

If your baby has CF there is a 25% chance that your next baby could also have CF.

Ask your doctor to refer you to a genetic counsellor for advice.

What should I do if I want a baby and am worried about CF?

If you are thinking about having a baby and are concerned about the risk of CF, you can ask your doctor or obstetrician for a carrier screening test before you become pregnant.

A blood or saliva test can show whether you or your partner carries the CF gene. If there is a high risk of passing on CF, you can talk to a genetic counsellor. You may want to consider other fertility options such as using IVF.

What should I do if I’m pregnant and worried that my baby has CF?

If you’re already pregnant and have a family history of CF, you can have carrier screening early in your pregnancy.

If you and your partner are both carriers of the CF gene, doctors can perform a chorionic villus sampling test. This can tell you if your baby has CF.

You can ask your doctor to refer you to a genetic counsellor who specialises in helping people in your situation.

Where can I get more information about cystic fibrosis?

Cystic Fibrosis Australia provides support to people with CF, their carers, and families.