Screening for sickle cell and beta thalassaemia

Messages to other parents

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, whatever their results. Most recommended that other parents should think seriously about being screened, to be prepared and informed about their child's health. They acknowledged that everyone has different views and has to make a decision that is right for them personally, but they still felt screening and diagnosis enable you to make informed choices and do the best for your child. As one mother said, 'I wouldn't have an abortion… Other people would think it's the best way, termination would be best for them… I think for each individual it's best to have the screening… If you want to keep the baby, it's better to be prepared and knowing, than not to be prepared and be shocked and sad.' Several felt it was very important for parents to act responsibly and to make sure their children knew about their own carrier status before they grew up.
Several people said their experiences of seeing family or friends with the conditions made them feel all the more strongly that screening was the right thing to do.
Timing of screening was an important issue. Many people would have preferred screening before they got into a relationship with someone, or before pregnancy. (See 'Telling people - implications for relationships and marriage'). If screening happens during pregnancy, several people stressed how important it was for it to happen as early as possible. (See also 'Timing and delay').
A few people commented that screening in pregnancy can make you anxious and that for some parents it might be better to wait until after the birth to find out if anything is wrong with the baby, especially if they would never consider a termination anyway. (See also 'Continuing with an affected or at risk pregnancy'). One father commented that discovering you are a carrier brings up worrying decisions you would otherwise not have to think about, especially in cases like theirs where the baby turns out to be unaffected. He thought that in some ways it might be nicer to go through pregnancy without realising anything could be wrong, although personally he was glad to have had the information.

Last reviewed December 2018.


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