Most babies will not have any of the conditions that are checked for during screening. They will get a normal screening result. This is sometimes called 'not suspected' or 'negative'.
Other babies will get a positive screening result. This means they may be at risk of having one of the conditions.
In rarer cases, babies will get a screening test result that further tests will show was not 100% correct. We call these results 'false positive' and 'false negative'.
False positives and false negatives are unavoidable. They happen in every screening programme.
Normal (not suspected) screening results
If your baby has a normal screening result this means that your baby is not suspected of having any of the conditions that we screen for. Normal screening results are sometimes called 'not suspected' or 'negative'.
We will not contact you with the heel prick results. But you can ask your public health nurse (PHN) for the results if you wish.
Like all screening, the heel prick has limitations. It may not pick up every case of the conditions screened for.
If a screening test is normal and your baby later turns out to have the condition, this is called a ‘false negative’ screening result. This is very rare.
If you have any concerns about your baby's health, contact your GP.
Positive screening results
If your baby has a positive screening result for any of the conditions, a nurse or doctor will contact you.
This usually happens a few days after your midwife or PHN sends your baby's blood sample to the lab.
Not a diagnosis
A positive screening result does not always mean your baby has one of the conditions. It is not a diagnosis.
A positive screening result means your baby may have the condition. But they need more tests to confirm. These tests are called diagnostic tests. Doctors will do these tests to confirm if your baby has the condition. Your baby may need to stay in hospital during this time.
If diagnostic tests show your baby does not have the condition, this is called a ‘false positive’ screening result.
If condition is confirmed
If your baby has one of the conditions, they will be referred to a specialist centre. A team of health professionals will work with you to manage your baby’s condition.
Screening helps to find babies with rare conditions at an early stage. These babies can then be offered treatment and supports to help improve their long-term health and wellbeing.
False positives and false negatives
No screening test is perfect. They all have limitations.
In rare cases, babies will get a heel prick screening test result that further tests will show was not 100% correct. We call these results false positives and false negatives.
False positives and false negatives are unavoidable. They happen in every screening programme.
We do our best to keep these to a minimum. We publish data every year in the National Healthy Childhood Programme Screening Programme's Annual Report. This shows the number of false positives and false negatives reported.
Limitations of heel prick screening
False negative result
A false negative is when heel prick screening indicates that a baby does not have a condition screened for (normal screening result). But the baby does have the condition.
A false negative is very rare. They are a known limitation of screening. Most babies who do have a condition will be detected during screening.
If you are worried about your child’s health or development, contact your GP or public health nurse.
False positive result
A false positive is when heel prick screening indicates that a baby is at risk of having a condition screened for (positive screening result). But further tests show that the baby does not have the condition.
Being told your baby is at risk of having a condition is worrying. All babies who have a positive screening test need to have further tests. This is to confirm if they have the condition or not.
If these further tests are normal, your baby does not have the condition.
Talk to your doctor if you have any questions.