Beta thalassaemia in pregnancy
Planning to have a baby is an exciting time. And for those considering starting a family, having beta thalassaemia is an important factor in planning for a pregnancy.
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. For more help with preparing for visits to your healthcare team, try our Prepare for Consultations resource.
Learn more about what pregnancy is like if you have beta thalassaemia in the Royal College of Obstetricians & Gynaecologists (RCOG) leaflet here.
Deciding to have a baby
Deciding to start a family is a big decision for anyone. But there are some things to consider before you conceive if you or your partner have beta thalassaemia.1
If you and your partner are thinking about getting pregnant, you may want to know the likelihood of passing on beta thalassaemia or other red blood cell conditions to your children and learn about getting the right support when making your decision.
People who are beta thalassaemia carriers have one healthy and one changed HBB
Whether you or your partner have or carry beta thalassaemia or other red blood cell conditions will affect the chances of your children having beta thalassaemia. If you don’t know if you or your partner could pass on beta thalassaemia or other red blood cell conditions, you can ask your healthcare team for a blood test – that may be available on the NHS – to see whether you or your partner are a carrier.1,4
For more information on the genetics of the condition, see the Causes and symptoms page.
Having beta thalassaemia and preparing for pregnancy1
If you have high iron load and are thinking about getting pregnant, it is important to discuss iron chelation with your healthcare team. You may be recommended to start iron chelation therapy. If you are already having iron chelation therapy, they may change or intensify iron chelation therapy and prescribe chelating medicines that are safer while trying to conceive or pregnant.
If you are trying for a baby, you may want to talk about supplements (e.g., folic acid and vitamin D), get vaccinations (e.g., hepatitis B), and take medications to prevent infection if you have had your spleen removed with your healthcare team. They may also book extra health checks to test your heart, liver, blood, thyroid and more.
Getting pregnant
While it’s possible to get pregnant if you have beta thalassaemia, some people need some extra help because the condition and its treatment can affect fertility.1 Therefore, you may consider talking to your healthcare team early on about1,4,5,6:
- Ovulation induction – using hormone therapy to help the body develop and release eggs
- Spermatogeneis induction – using hormone therapy to help the body develop sperm
- In vitro fertilisation (IVF) – when an egg is removed from the body and fertilised with sperm in a laboratory before being returned to a woman’s womb to grow and develop. This may be with people’s own egg or sperm, or may use donor egg or sperm
- Pre-implantation genetic testing (PGT) to check embryos for genetic conditions
Your healthcare team can advise you with what may suit you.
Support during pregnancy
It’s possible for people with beta thalassaemia to have a healthy pregnancy, but it’s important to talk to your healthcare team first.1 They can advise you on things to help support you to stay well and support you during pregnancy.
Antenatal care (healthcare and support during your pregnancy) will be provided by obstetricians, midwives, haematologists and other specialists. The care you will receive from them may involve1:
- Closely monitoring your baby’s growth
- Monitoring of your heart and liver function, blood count and blood sugar
- Monitoring of iron levels in your heart and liver
- Having transfusions (if you don’t usually) or having more transfusions (if you already regularly have them) if you become more anaemic or your baby’s development may be affected
- Iron chelation to reduce iron levels after 20 weeks of pregnancy depending on the results of your pre pregnancy scans, iron levels (blood tests) and repeat scans during pregnancy
- Advice and treatments to reduce the chances of developing blood clots (e.g., low-dose aspirin or heparin)
Labour, giving birth and breastfeeding1
During your pregnancy, you and your baby will be monitored closely to help your healthcare team
- See if you need iron chelation and blood transfusions around the time of labour
- Discuss whether you will give birth vaginally or via caesarean (C-section)
- Ensure that you and your baby are receiving the tests, care and treatments you need
- Reduce your risk of developing blood clots (you may need heparin injections after you give birth)
- Advise you on whether breastfeeding is safe for your baby after birth
This will help them develop a plan that could meet your needs and wishes for delivery.
The checklist below summarises the care offered to you before and during pregnancy with beta thalassaemia, which can help guide your discussions with your healthcare team.
Pre-conception
During pregnancy
After birth
Testing your baby for beta thalassaemia
Ideally, you and your partner will have had tests to determine whether your children could have thalassaemia before giving birth.
However, you may also find out whether your baby has beta thalassaemia through routine tests. When your baby is around 5 days old, they will be offered a test (this may be called a newborn blood spot screening or heel prick test).7 This checks if your baby has certain conditions.
If tests show that your baby has beta thalassaemia, a specialist nurse counsellor will contact you to talk to you about the condition, answer any questions and book your baby a visit to the haematologist.7
If you have any questions or concerns before or during your pregnancy, speak with your healthcare team. Your health and that of your baby is a priority, so it’s important to ask if you’re unsure about anything. Your healthcare team are there to support you and together you can make a plan that works for you.
Talk to your healthcare team
It’s possible for you to have a successful pregnancy with beta thalassaemia1 and there is lots of support available to help you have a baby if you choose to. Keep talking to your healthcare team and take advantage of all the advice and support they can give you.
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