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Partner carrier screening
Sickle cell and beta thalassaemia are inherited recessive conditions. 'Recessive' means a person can only inherit the condition if both parents are carriers. Each child...
For many people, being told they are a carrier during pregnancy is a shock, especially if they are not fully aware that they are being tested for these conditions and do not know much about them. Pregnancy is already an emotional time, and anything that makes people worry about the baby’s health will be additionally stressful. (The NHS Screening Programme is working to ensure that in future everyone receives clear and consistent information and advice before and after screening.) A booklet ‘Screening tests for you and your baby’ should now be given to all pregnant women by their midwife or GP and it gives information about screening for sickle cell and thalassaemia in early pregnancy.
A few people said they were not really too worried or shocked when they got their results. This might be because they knew the condition was in their family and they were half-expecting the result. For some people it was because they didn’t fully understand the consequences until they got to talk to a counsellor. One woman who had recently arrived from Bangladesh felt she did not really understand the significance of the results until after her son was born with beta thalassaemia major.
Some people find out through a letter, and then make an appointment to see a counsellor. Others get a phone call first. Some people felt a phone call was better because they could talk straight away to the counsellor and get information and reassurance, but it can still be just as shocking as a letter. A few people used the internet to help find out more, sometimes while they were waiting to see a counsellor and sometimes when they were waiting for partner carrier screening results.
People are often concerned at first that they have some serious illness. Talking to a counsellor can help in understanding the difference between being a carrier, which does not affect your health, and having the condition. Many people commented on how helpful and supportive they found the specialist sickle cell and thalassaemia counsellors they met.
A few people who are beta thalassaemia carriers find they get tired and anaemic sometimes. This has no serious effect on the person’s health, but it may help their doctor to know they are a carrier. Some women who are beta thalassaemia carriers become more anaemic when they get pregnant.
Carriers of beta thalassaemia may need a special blood test (serum iron or serum ferritin test) to diagnose iron deficiency if this is a concern raised by their doctor. A normal blood test on someone who is a carrier of beta thalassaemia can look as if they have an iron deficiency when actually they don’t. If a doctor does not know that a person is a beta thalassaemia carrier they could prescribe iron medicines thinking it is iron deficiency when it is not which, in the long run, could do more harm than good. They should only take iron medicines if the serum iron or serum ferritin tests show a shortage of iron in the blood. (Local sickle cell and thalassaemia centres can provide more detailed advice on this topic.)
For these reasons, carriers are usually advised to carry a ‘haemoglobinopathy’ card to show to health professionals, stating that they are a carrier.
There are also some health advantages in being a carrier. Beta thalassaemia and sickle cell carriers have some protection against malaria, and there is some evidence that beta thalassaemia carriers have a lower risk of coronary heart disease.
See also sections on:
‘Newborn screening- the effect on parents’
‘Awareness and understanding about the conditions’
Sickle cell and beta thalassaemia are inherited recessive conditions. 'Recessive' means a person can only inherit the condition if both parents are carriers. Each child...
Almost everybody we spoke to thought screening for sickle cell and beta thalassaemia was a good idea and they were glad they'd had the tests,...