Your baby will have the heel prick test soon after it is born. The screener will take a few drops of blood from your baby's heel. The laboratory will then test the blood taken for a number of serious, rare diseases.

All the diseases tested for are easily treatable, via medication or your baby’s diet. Detecting diseases soon after the birth of your baby makes it possible for treatment to start quickly. Any serious harm to your baby's development can be avoided as well.

So, it really is important for your baby to have the heel prick test.

Once you have registered the birth of your baby, the screener will come to your home to do the heel prick test. The screener will not usually give you a date or time in advance. Sometimes, your midwife or maternity nurse will do the heel prick test.

If your baby is in hospital, the heel prick test will be done there.

During the heel prick test, the screener will take a few drops of blood from your baby's heel. This blood is collected on a special card: the heel prick card. Your baby may cry for a little bit afterwards.

When doing the heel prick test, the screener will ask you for the following information:

• How many weeks pregnant you were when your baby was born;
• The birth weight of your baby;
• The name and telephone number of your GP.

Watch the video De hielprik bij ouders thuis (in Dutch).

• A disease of the thyroid gland (congenital hypothyroidism);
• A disease of the adrenal gland (adrenogenital syndrome);
• Hereditary anaemia (sickle cell disease and thalassaemia);
• A disease of the lungs (cystic fibrosis); 
• A number of metabolic diseases;
• An immune deficiency disorder (SCID);
• A muscle disease (SMA).

These diseases are usually inherited. They are not common.

One inherited disease identified by the heel prick test is only treatable in boys: the metabolic disease adrenoleukodystrophy (ALD). So, only baby boys will have their heel prick blood tested for ALD.

More information about the various diseases.

• If the test results are good, you will receive a letter from RIVM within five weeks;
• If the results are abnormal, the heel prick test may have identified a disease. In this situation, your GP will contact you to arrange follow-up testing in the hospital by a paediatrician. You will then know whether or not your baby has a disease.

Sometimes, there may not be enough blood to do all the tests necessary in the laboratory. The screener will then come to your home to do another heel prick test.

There may also be times when it is unclear whether or not your baby has a particular disease. Your baby will have another heel prick test in this situation too.

Almost all diseases detected by the heel prick test are inherited.

Often - unbeknown to the family - both of the baby’s parents are the carriers of a disease. You will not notice if you are the carrier of a disease that is detected by the heel prick test.

If a paediatrician at the hospital has confirmed that your baby has an inherited disease, it can be a good idea to have other family members tested too. You can ask the paediatrician whether your baby's inherited disease could also affect the health of other family members.

The heel prick test is used to detect diseases soon after the birth of your baby. Carriers of the diseases identified by the test are not detected because they are not sick. The laboratory will only identify the carriers of sickle cell disease - a form of hereditary anaemia - when it tests for this disease.

This disease is not tested for specifically, but it is discovered.

The carriers of sickle cell disease are not ill and will not get ill.

If the heel prick test shows that a baby is a carrier of sickle cell disease, one or both parents will be carriers or one of the parents will have sickle cell disease.

This information may be important if a baby’s parents want to have more children in the future. Visit www.pns.nl/hielprik/sikkelcelziekte (in Dutch).

When doing the heel prick test, the screener will ask if you want to know if your baby is a carrier of sickle cell disease. You will be notified if you would like to be told.

After you register the birth of your baby, RIVM will receive your baby’s personal data (name, address and date of birth, etc.) from the municipality. These data are entered into an information system. This ensures that youth health care is able to contact you to arrange the heel prick test on time. Your baby’s personal data will also be entered into the information system in which the blood tests results are recorded.

After the heel prick test, some blood tests will be done in the laboratory. The results will show whether your baby might have a disease. We call these results ‘heel prick data’. The screener will record your baby’s birth weight and the length of your pregnancy on the heel prick card. These data may be needed to assess the results of the blood tests properly. They are heel prick data too.

The heel prick data will be entered into an information system as well. They will form part of your baby’s heel prick record.

If you would prefer not to have your baby’s data stored in an information system, RIVM can separate your baby's heel prick data from its personal data after the results of the heel prick test become available.

It will then no longer be possible to trace the data back to your baby. To arrange this, contact [ignore]AVG-NHS@rivm.nl[/ignore].

The information systems on which heel-prick screening data are stored are very secure.

There will usually be some blood left on the heel prick card after the blood tests.

The part of the card containing the leftover blood is kept separately from the part of the card that contains your baby’s personal data.

The leftover heel prick blood is needed to monitor the quality of heel prick screening. The blood is kept for one year for this purpose.

After the heel prick screening, the leftover heel prick blood and the heel prick data may also be retained for the purpose of scientific research. This is only possible with the consent of parents (which they are asked to give at the time of the heel prick test).

With the consent of parents, leftover heel prick blood is stored for the purpose of scientific research for five years. It is then destroyed. If parents do not consent, the blood is retained for just one year. The object of the research is to improve heel prick screening even more. The research must also have been approved by an RIVM committee. When doing the research, researchers will not be able to trace the left-over heel prick blood or heel prick data to a particular baby.

Sometimes, a paediatrician will want to use leftover heel prick blood to arrive at a diagnosis on a baby that is under his/her care. The paediatrician will only be given access to this blood with the special consent of the parents.

For more information about consenting to the use of leftover blood and heel prick data for scientific research, see: www.pns.nl/hielprik/wo (in Dutch).

The heel prick test is free. The cost of any follow-up testing necessary will be covered by your health insurance.

Sometimes, an abnormal result for the heel prick test will mean that both parents need to be tested too. The costs involved will fall under the excess for their health insurance.

The heel prick test is most accurate if done in the first week after your baby is born. Follow-up hospital testing will always be necessary after an abnormal result. This testing may show that your baby is actually healthy. Unfortunately, it is impossible to guarantee the accuracy of the results of the heel prick test.

There is a very small chance of a false result after the heel prick test - in other words, the test has not detected any problems, but your baby does actually have one of the diseases. If you are worried about your baby's health, please contact your GP.

• If you have a complaint about your baby’s heel prick test, contact the organisation that did the test;
• If you have a different complaint about the heel prick test, visit www.rivm.nl/contact for information about RIVM's complaints procedure.