Beta thalassaemia: Family planning
It's exciting to think about starting a family. Even if this is still some way off, beta thalassaemia still plays an important role, even for patients with beta thalassaemia minor, i.e. carriers.
Talk to your doctor about family planning well ahead of the time, even if you are not yet sure if you want to have children at all. It can also be helpful to talk to members of DEGETHA, one of the patient organisations. There are lots of experienced people there in similar situations to you. Some of them will themselves be parents with beta thalassaemia, and they will be able to answer your questions. Take a look:
You can also use the information below to get ready for a conversation with your doctor. You should also look at the guide, "How to get the most out of your doctor's appointments".

So you want a baby?
Starting a family is a lot of responsibility. If you or your partner has beta thalassaemia minor, intermedia or major, there are extra things that you need to take into account when planning a family.1
It is harder for people with beta thalassaemia to get pregnant, but not impossible. You and your partner should always both seek medical advice if you want to have a baby. Talk with your doctor(s). A pregnancy in a beta thalassaemia patient should always be planned carefully and ideally be monitored by experienced doctors specialising in haematology and gynaecology.
Beta thalassaemia is hereditary and can therefore be passed on to children.
If one of the parents has beta thalassaemia or if beta thalassaemia has occurred elsewhere in the family, the parents-to-be can take a test for the modified haemoglobin gene and seek genetic counselling. Health insurance companies usually cover these costs. Talk with your doctor(s) about this. The probability of passing on a defective haemoglobin gene to a baby is always equally high. This means that, even if you as a beta thalassaemia patient have had 1, 2, or even 3 healthy children, the next can still always be born with beta thalassaemia.
It is possible to test the unborn child for the modified haemoglobin gene (prenatal diagnostics).2 For this, blood is taken from the umbilical cord and is examined in a laboratory. This test should be done as early as possible.
If you or your partner gets pregnant (unexpectedly), please do talk to a doctor. Discussions with doctors are always confidential. If you are undecided about what to do, you can also contact a patient organization
If a woman with beta thalassaemia gets pregnant, this can also be a health risk if she does not receive proper medical care.
If you have beta thalassaemia, you might need more transfusions than you did before you became pregnant. Your doctor will probably also have to change your iron chelator therapy. Even if you have beta thalassaemia minor, you might still need transfusions during your pregnancy.2 In any case, your heart health must always be monitored.

Getting pregnant with beta thalassaemia
Even if you have beta thalassaemia, you can still get pregnant – although the condition or some of its treatments can affect your fertility. This means that it might be a little harder to get pregnant.1
The fact that it is more unlikely that you will be able to get pregnant does not mean that you can stop using birth control if you as a beta thalassaemia patient do not wish to become pregnant.
If you do want children, IVF (in vitro fertilisation) might also help. Your health insurance company will cover the cost of a certain number of IVF attempts – in most cases, your state health insurance will cover 50% of the cost of treatment and medicines.4 Contact your health insurance company and ask which costs it will cover and what the requirements are. You can also turn to a patient organization for advice.

Talking to your treatment team
You can still get pregnant even with beta thalassaemia, and your treatment team is there to support you with your family planning. Keep in touch with them and with your gynaecologist regularly before, during and after your pregnancy and make use of all the types of support that are offered to you. A patient organisation will be able to tell you what kinds of help are available. For more information, simply click here.

Ressourcen-Hub
Unsere Unterlagen zum Herunterladen helfen Dir dabei, Dein Leben mit Beta-Thalassämie zu meistern.
This might also interest you…