Planning to have a baby is an exciting time.
And for those considering starting a family, having sickle cell disease is an important factor in planning for a pregnancy.
Women with sickle cell disease can have successful pregnancies with the right support and management in place. So if you’re thinking about having a baby, you can start talking to your healthcare team early on – even if you’re not sure whether you’re ready to start trying just yet. They can make sure you have all the information you need before you make your decision. You can also use the information below to help have these conversations with your healthcare team and get the support you need.
Deciding to have a baby
Deciding to start a family is a big decision for anyone. But there are some extra things to consider before you conceive if you or your partner have sickle cell disease.
If you’re thinking about getting pregnant, you should consider the likelihood of passing on sickle cell disease to your children. For example, if your partner is a carrier, there is a 50% chance your baby would inherit sickle cell disease and a 50% chance your baby would be a carrier.1
Because of this, it’s important for your partner to undergo genetic testing to see if they’re a sickle cell carrier. This will help you make informed choices about having a baby.
The test is free to everyone at any time – you don’t have to be thinking about pregnancy to get tested – and can be requested through your GP.2 This means your partner can get tested early in your relationship if they are wanting to find out whether they’re a sickle cell carrier.
A blood test is done to see if your partner is a sickle cell carrier.2 You’ll both be supported through the process by a genetic counsellor. They’ll help you understand the risks and benefits of the test, the potential results, and what it might mean for you.3
Sickle cell disease is inherited from both parents, so if your partner is not a carrier then your children will not have sickle cell disease.4 But if your partner is a carrier (and you have sickle cell disease) your genetic counsellor can discuss with you your options for having children. These include tests for sickle cell during pregnancy, adopting a child and trying IVF.2
For more information on the genetics of the disease, see the Causes and symptoms page.
Hear Dr Drasar’s tips on starting a family
Support before, during and after pregnancy
If you’re planning to get pregnant it’s important to talk to your healthcare team first. They can advise you on things to help support you to manage the health of your baby and you during your pregnancy.
The table below summarises the additional care offered to you before and during pregnancy with sickle cell disease.
Testing your baby for sickle cell disease during pregnancy
If you decide to have your baby tested for sickle cell disease while you’re pregnant, there are two tests that may be offered. The first is chorionic villus sampling (CVS) and the second is an amniocentesis test.5
How will pregnancy affect your sickle cell disease?
There are some complications that may occur during pregnancy if you have sickle cell disease.2 Make sure to keep talking to your healthcare team as they can advise on how you can manage your disease and how to try to prevent sickle cell crises during your pregnancy.
Everyone’s experience of pregnancy will differ, but some of the most common things that can affect your sickle cell disease are1:
- A greater number of painful crises during your pregnancy mainly towards the end.
- You may become more anaemic as your pregnancy progresses – keep talking to your healthcare team who will monitor you and help discuss treatment options if appropriate.
- The placenta may not work as well, which can affect the growth of the baby, but this will be monitored with regular scans.
If you have any concerns during your pregnancy, get in contact with your midwife and obstetric team, haematology team or emergency care services. They will provide the right care and support you need for you and your baby.
Talk to your healthcare team
Women with sickle cell disease can have successful pregnancies and there is lots of support available to help you have a baby if you choose to. Keep talking to your healthcare team throughout your pregnancy and take advantage of all the advice and support they can give you.
Support from specialised and experienced staff at Sickle Cell and Thalassemia centres is also available. You can ask your GP or healthcare team to refer you to a specialised centre to talk about pregnancy. Or if you have been seen at one before, get in touch with them directly to see what pregnancy services they offer and whether a referral from your GP is needed.
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
