Newborn blood spot test

Why the newborn blood spot test is done

The newborn blood spot test helps to check if babies have any of 9 rare conditions, some of which can be life-threatening.

Knowing early whether a baby might have or get these conditions means they can start to be monitored and treated sooner.

This can improve their long-term health and development, and prevent severe disability.

Show the 9 conditions the test looks for

The newborn blood spot test checks for:

• cystic fibrosis (CF)
• sickle cell disease (SCD)
• congenital hypothyroidism (CHT)
• phenylketonuria (PKU)
• medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
• maple syrup urine disease (MSUD)
• isovaleric acidaemia (IVA)
• glutaric aciduria type 1 (GA1)
• homocystinuria (HCU)

You can find out more about the blood spot test and these conditions on GOV.UK.

Who the newborn blood spot test is for

The newborn blood spot test is recommended for all babies.

It's normally done when your baby is 5 days old.

How to get the newborn blood spot test

You'll be given information about the newborn blood spot test during pregnancy at your first midwife appointment (sometimes called your booking appointment) and again soon after your baby is born.

After your baby is born, you'll be asked by a healthcare professional if you want your baby to have the test.

They usually have the test when they're 5 days old, but sometimes it might be earlier or later.

The newborn blood spot test is recommended for all babies but it's your choice if you want your baby to have it. The test is the best way to find any of the conditions early and start treatment as soon as possible.

If you decide not to have the test but change your mind later, speak to your midwife, health visitor or GP.

How the newborn blood spot test is done

During the newborn blood spot test, a healthcare professional will prick your baby's heel using a device that has a tiny needle and collect a few drops of blood on a special card. The card is then sent away to be tested.

The test is very quick and there are no known risks to your baby.

You do not need to do anything to prepare, but your baby may cry or be uncomfortable during the test.

Feeding and cuddling your baby, and making sure they're warm and comfortable, can help calm them.

The test is usually done at home by a community midwife or health visitor when your baby is 5 days old but may be done while in hospital or at another planned appointment.

Getting the results of a newborn blood spot test

How you get the results of a newborn blood spot test depends on what the result is.

You may get the results in a letter, or you may be told by phone or in person.

The possible results of the newborn blood spot test are:

• no signs of any condition found (no conditions suspected) – most babies will have this result
• carrier of a condition
• signs of a condition found (condition suspected)

Sometimes the test might need to be done again. In this case, someone will contact you to explain why and arrange a second test.

There are lots of reasons why this might happen, and it does not necessarily mean anything is wrong with your baby.

If you've not had your baby's results by the time they're 6 weeks old, speak to your midwife, health visitor or GP.

The results should also be recorded in your baby's personal child health record (red book).

What the results of the newborn blood spot test mean

What happens to your baby's newborn blood spot test card

After being tested, blood spot cards are stored for at least 5 years and may be used:

• to check the result or for other tests recommended by your doctor
• to improve the newborn blood spot test programme
• for research to help improve the health of babies and their families in the UK (this will not identify your baby and you will not be contacted)

There's a small chance you may also be invited to take part in optional research about the newborn blood spot screening programme. Let the person doing the newborn blood spot test know if you do not want to be contacted.