Additional testing after the heel prick

Your baby had the heel prick. The blood sample has been tested for a number of diseases. The results showed that your child may have some form of hereditary anaemia.

To verify whether your child has hereditary anaemia, additional blood tests will be necessary – for your child, and in some cases also for you, as the parents. These blood tests will be performed by a paediatric haematologist. This is a doctor specialised in treating children, who also knows a lot about hereditary anaemia.

To undergo these tests, it is necessary to visit a specialist hospital. Your family doctor will discuss this with you and refer you to an appropriate hospital.

It is important to detect hereditary anaemia at an early stage. Early detection makes it possible to treat the disease timely, and prevent young children from becoming seriously ill.

The paediatrician will ask you if other family members have hereditary anaemia. You can help by asking your family relatives about that before your hospital appointment.

Write down your questions before going to the appointment. It will help you to pose all questions you might have during the appointment with the paediatrician. Go to the hospital appointment together with your partner. Two hear more than one. If your partner is unable to go along, take another person you trust with you.

It takes a few weeks before the extra blood tests are completed and results are known. At that point, you’ll have a second appointment with the paediatrician. He or she will then tell you exactly about your child’s medical situation and how the disease will be treated.

You will also receive information about the heredity aspects of the disease.
If you have trouble understanding all the information, ask your paediatrician to explain again. Your child will continue to be monitored by the paediatrician.

When a person has hereditary anaemia, there is a problem with the red blood cells. There are three different types of hereditary anaemia that can be detected with the heel prick: sickle cell disease, alpha thalassemia and beta thalassemia. Your family doctor, and then the paediatrician, will tell you which type of hereditary anaemia your child may have.

Although hereditary anaemia cannot be cured, effective treatment is available. The type of treatment depends on the type of anaemia your child has. The paediatric haematologist will give you more specific information about the treatment.

In the Netherlands, about 35 children with sickle cell disease are diagnosed every year. 20 to 40 children have alpha thalassemia. 2 to 5 children have beta thalassemia.

The costs of hospital testing will be paid by your health insurer. The excess on your health insurance policy does not apply to children under the age of 18. However, it is important that the hospital has a referral from your family doctor. Sometimes, parents also need to have tests done. These costs may be deducted from the policy excess.

For more online information about hereditary anaemia, go to https://www.rivm.nl/en/heel-prick/clinical-picture. Scroll down to: ‘Blood disorders’.

Answers to frequently asked questions are available at https://www.rivm.nl/en/heel-prick.
Unable to find what you are looking for? Contact the medical advisor of the Department for Vaccine Supply and Prevention Programmes (RIVM-DVP). The medical advisor’s name and telephone number are in the letter accompanying this leaflet.

Have you already taken your child to the paediatrician? Then you can ask him or her for additional information.

The heel prick results and the results of the extra tests are recorded in NEORAH. The paediatrician will ask your permission to store your child’s data.
Data registration in NEORAH is important for the quality of the heel prick screening. For more information and a privacy statement, please go to https://www.pns.nl/hielprik/juridische-informatie.

 

Regional offices of the RIVM-DVP

North-East    Groningen, Friesland, Drenthe, Overijssel, Flevoland and Gelderland    +31 (0)88 678 89 30
West    Utrecht, Noord-Holland and Zuid-Holland    +31 (0)88 678 89 50
South    Zeeland, Noord-Brabant and Limburg    +31 (0)88 678 89 40