This information is for people who have had a blood test that definitely shows they carry alpha zero thalassaemia.
What does carrying Alpha Zero thal mean for me?
Q: Is an Alpha Thal Carrier ill?
- No. Thalassaemia carriers are not more likely to get other illnesses. Carrying thalassaemia does not make them weak and they can do any kind of job they want.
Q: Is there any treatment to get rid of Alpha Thal Trait?
- No. If you are born carrying thalassaemia trait you will always have it.
Q: Can an Alpha Thal Carrier develop a more serve form of Thalassaemia?
- No, they cannot.
Q: Is Alpha Thal catching?
- No, it is not.
Q: Do Alpha Thalassaemia Carriers ever need iron?
- Yes, they sometimes do, because they can also get iron deficiency anaemia like other people. Then they may need iron medicine. But it is important that you only have iron medicine if you really need it.
- The best way to tell whether a thalassaemia carrier needs iron is by a blood test that measures the amount of iron in your blood (a serum iron or serum ferritin test). If you do not have this test, it may appear that you are short of iron simply because you have small red blood cells and you may keep taking extra iron even when you do not need it. This will do you no good and in the long run it could be harmful.
Q: What about pregnant women?
- Pregnant women who carry alpha thalassaemia trait may need extra iron in the same way as any other pregnant woman.
Q: Why is Alpha Thal found in certain countries?
- People who carry any kind of thalassaemia are less likely to die if they get malaria. In the past, in countries where malaria was common, thalassaemia carriers survived malaria when other people died, so carrying thalassaemia gave them an important advantage.
- These people passed thalassaemia on to their children, so as time passed thalassaemia became common in parts of the world with malaria. Now we can usually cure or prevent malaria, so carrying thalassaemia is less of an advantage.
- Because it is inherited, it does not go away from a population when malaria disappears, or from people born in another part of the world.
Q: What could my Alpha 0 Thalassaemia mean for my children?
- It is important to know that you carry alpha zero thalassaemia, because sometimes carriers can have children affected by alpha zero thalassaemia major. This is a serious disease of the unborn baby. If you became pregnant with a baby with alpha zero thalassaemia major, you could get raised blood pressure and have difficulties during pregnancy or delivery. To explain more about this risk we must see how alpha zero thalassaemia trait is passed on from parents to their children.
Let us consider three sorts of couples.
- A carrier of alpha zero thalassaemia has a partner who does not carry any kind of alpha thalassaemia. This is the commonest situation. There is no problem for an alpha thalassaemia carrier whose partner is not a carrier. In each pregnancy there is a 1 in 2 chance that the child will carry alpha thalassaemia and a 1 in 2 chance that it will not. None of the children can have alpha thalassaemia major. The mother will have no particular or additional problems in pregnancy due to the alpha thalassaemia.
- Occasionally, a carrier of alpha zero thalassaemia chooses a partner who also carries alpha zero thalassaemia. In each pregnancy there is a 1 in 4 chance of a baby with alpha zero thalassaemia major, and a 3 out of 4 chance that the baby will be healthy.
- Sometimes a person who carries alpha zero thalassaemia chooses a partner who carries another type of alpha thalassaemia called alpha plus thalassaemia. Alpha plus thalassaemia trait is also called the harmless form of alpha thalassaemia trait because it can only cause problems when it is combined with alpha zero thalassaemia trait. When one of a couple carries alpha zero thalassaemia trait and the other carries alpha plus thalassaemia trait, most of their children will be completely healthy. But there is a one in four chance for each child to inherit alpha zero thalassaemia from one parent and alpha plus thalassaemia from the other. This leads to Haemoglobin H disease (Hb H disease).
Q: What is Alpha 0 Thalassaemia Major?
- Other names for alpha zero thalassaemia major are; alpha thalassaemia hydrops fetalis and Haemoglobin Barts hydrops fetalis. This is a very serious anaemia that develops in the unborn baby. It can only happen when both parents carry alpha zero thalassaemia. The unborn baby cannot make enough haemoglobin and becomes very anaemic. It becomes weak and its heart cannot pump blood around properly. The pregnancy seems to go normally up to about five months, sometimes for longer, but then the baby stops growing normally and the mother may develop high blood pressure. An ultrasound examination (a scan) may be done.
- This usually shows that the baby is “oedematous” – which means that it is puffed up with water. Usually the mother starts labour early, between 28 and 36 weeks of pregnancy, and the baby is dead or dying when it is delivered. There is a one in four chance of the same thing happening in any further pregnancies. This problem can be avoided. This is why it is so important for people who carry alpha zero thalassaemia to find out whether their partner also carries it, before they have a family.
Q: Can Alpha 0 Thalassaemia be treated?
- Treatment is rarely helpful. Only a few babies with this condition have been known to survive and they have required lifelong transfusions.
Q: Can Alpha 0 Thalassaemia Major be prevented?
- Yes. When both parents carry alpha zero thalassaemia trait, there are several ways to avoid having a stillborn baby. It is possible to test the unborn baby very early in a pregnancy, to see whether it is healthy or suffers from alpha zero thalassaemia major. This test is called prenatal diagnosis. It can be done at any time after 10 weeks of pregnancy. When prenatal diagnosis shows that the developing baby is affected, the parents usually choose to have the pregnancy terminated because the baby has no hope of a normal life. Then they can start another pregnancy, hoping to have a healthy child this time. Remember, there is a three out of four chance of a healthy child in each pregnancy.
- There are several other ways to avoid having children with alpha zero thalassaemia major. To find out more, ask your doctor to arrange for you to visit a haemoglobinopathy or genetic counsellor.
Q: Is there anything else I should do now?
- You inherited your alpha zero thalassaemia from your father or your mother, so your brothers and sisters and other blood relatives could also be carriers. For instance, your brothers and sisters have a 1 in 2 chance being a carrier. Show them this information and advise them to ask for a blood test for alpha thalassaemia before they have children.
- Sometimes a person who carries alpha zero thalassaemia has a partner who carries beta thalassaemia or an abnormal haemoglobin such as Hb S, C, D or E. It is possible for someone who carries one of these to carry alpha thalassaemia as well. So, if your partner carries one of these, he or she should also be tested for alpha thalassaemia. If he or she does not carry alpha thalassaemia, there is practically no risk that your children could have a severe anaemia due to alpha thalassaemia.
Remember that important problems can only arise for an alpha zero thalassaemia carriers if they choose another alpha zero thalassaemia carrier as a partner. Even then, problems are uncommon.