Overview

This information is for people with sickle cell disease (SCD) who are either pregnant, or planning to get pregnant. 

If you have any more questions about your pregnancy you can speak to the sickle cell nurses, phone: 07548 152680 or 020 7188 1424, or email: [email protected].  

Planning a pregnancy

It is important that you let your sickle cell team know that you are planning a pregnancy. 

They will help you to be in the best possible health before you become pregnant.  

Until that time, they can advise which contraception is best for you. 

Whether you are planning a pregnancy or not, you should see the team at least once a year, so that you can have checks to monitor your health. 

The checks may include: 

• a detailed scan of your heart, called an echocardiogram

• blood pressure, pee (urine) tests, and blood tests

• a special eye test (retinal screening) to detect problems at the back of the eyes 

Taking hydroxycarbamide (hydroxyurea)

Taking hydroxycarbamide (hydroxyurea) during pregnancy is not recommended. If you are taking this medicine, you should stop taking it at least 6 months before trying to get pregnant. You should use contraception during this time.

If your partner is taking hydroxycarbamide, they need to stop taking it 3 to 6 months before you try to get pregnant. 

Your SCD team will also need to review any other medicines you are taking.

If you find out you are pregnant while you are taking hydroxycarbamide, stop taking it immediately and contact your sickle cell team as soon as possible. If this happens, you may need extra monitoring during the pregnancy.

Screening for sickle cell disease

Partner testing 

If you are planning a pregnancy, you should consider finding out whether your partner also has SCD, or if they are a carrier, before getting pregnant.  

Testing is available, and is done at Wooden Spoon House (the community sickle cell and thalassaemia centre). 

If you have SCD or are a carrier, but your partner does not have SCD and is not a carrier, your baby will not have SCD.  

If your partner has SCD or is a carrier, specialist counselling is available. You will see a genetic counselling nurse who will give your partner their results, and discuss what this means for you both and your baby. This will help you both decide whether to have tests when you become pregnant to find out if your baby has the condition. This can be a difficult decision for many couples.  

Testing options can be discussed with the genetic counselling nurse. This is usually at Wooden Spoon House. 

The NHS has more information about screening for SCD. 

Will my pregnancy be affected if I have the sickle cell trait? 

Sickle cell carriers do not usually have symptoms during their pregnancy.

However, if you are a sickle cell carrier, you can pass the condition on to your children if your partner is also a carrier, or has SCD.  

GOV.UK has detailed information about being a sickle cell carrier.