Pregnant woman stands outside in front of a clothesline with children's clothes and smiles.

Pregnancy with sickle cell disease

Family planning with sickle cell disease

Thinking about starting your own family is exciting and raises many questions. Even healthy people face many uncertainties. So it is not surprising that people with sickle cell disease have lots of additional questions.

It can also be helpful to talk to members of DEGETHA, one of the patient organisations. There are lots of experienced people there in similar situations to you. Some of them will themselves be parents with sickle cell disease, and they will be able to answer your questions. Take a look: Community page. You can use the information below to gain an initial overview of the topic in advance and to prepare for the conversation with your treatment team.

Close-up of hands resting on a lap. The child wearing a green knitted sweater.
Two people folding baby clothes on a table. Close-up of children's feet in black and white striped pants and black sneakers on a carpet.

So you want a baby?

Having a child and starting a family is a big decision for anyone. If you or your partner has sickle cell disease, there are some additional things that you should take into account in your planning because, as you know, sickle cell disease is inherited.1

If you have sickle cell disease but your partner is healthy, the child that you have together will most likely only be a carrier of the HbS gene.2 This means that, in all likelihood, your child will not have sickle cell disease and will therefore not have any symptoms.2

If you have sickle cell disease and your partner is a carrier of the HbS gene (or a carrier of a different mutated haemoglobin gene), there is a 50% probability that your child will also have sickle cell disease.2,3 There are consultation and testing options available to determine whether he/she is a carrier of sickle cell disease.2

You can find more information on the genetics of sickle cell disease on the "Causes and symptoms" page.

 

Talk to your doctor about family planning well ahead of time. He/she will be able to advise you on how to safeguard your health and that of your baby as far as possible during pregnancy.

You can also use the information below to get ready for a conversation with your doctor.

Doctor talking to a patient with sickle cell disease in a treatment room.

Before conception/pregnancy

Adapting your medication

Your treatment team may adapt your (medicinal) treatment, as it may harm your unborn child.4  Your treatment team will also check whether your vaccination status is up to date.4 

Genetic counselling

If one of the parents has sickle cell disease, the parents-to-be can take a test for the mutated haemoglobin gene and receive genetic counselling.4 Talk to your doctor about it.

During pregnancy

Close monitoring and check-ups

Additional tests and monitoring are recommended during your pregnancy – for example, to monitor your blood pressure and the growth of your unborn baby.4 

What you can do yourself

Your treatment team can give you recommendations for things you should look out for during pregnancy. This includes avoiding extreme temperatures, dehydration and physical overexertion, as this can trigger sickle cell crises.4

Prenatal diagnostics

It is possible to test your unborn baby for sickle cell disease.4 Your treatment team will be happy to provide you with more information.

After the birth

Monitoring after the birth

You are at increased risk of sickle cell crises after the birth, particularly if you had a general anaesthetic.4 Feel free to ask your treatment team any questions you may have about this.

Close-up of the legs of a crawling baby.

Testing your unborn baby for sickle cell disease

As a pregnant woman with sickle cell disease, you can have your unborn baby tested for sickle cell disease following consultation with your doctor.4

In order to do this, the amniotic fluid can be tested, for example.4

How will pregnancy affect your sickle cell disease?

There are always certain risks involved with pregnancy, as complications may occur.4 The specific risks related to sickle cell disease will depend on your individual health condition and the severity of your disease – in any event, any pregnancy of someone with sickle cell disease is classed as a high-risk pregnancy.4 It is important for you to be closely monitored during the pregnancy, and you will typically receive more check-ups than healthy pregnant women.4

Complications that may occur during pregnancy include pain crises, bleeding, premature birth and reduced weight gain of the unborn baby.4

Although pain crises are generally treated according to the same principle as before pregnancy,4 there are some medicines that you cannot use during pregnancy.4 It is essential that you talk to your haematology and gynaecology doctors to find out which products are and are not allowed.

It is sensible to do a benefit-risk assessment before each use of a medicinal treatment.4

Illustration of a hand holding a green circle symbol with a heart and star, symbolizing pregnancy.

If you have any problems during pregnancy, it is vital that you contact your midwife, the obstetrics team or the emergency services. They will provide you and your baby with the care that you both need.

Talk to your treatment team

If you decide to have a baby, there are many types of support available, as women with sickle cell disease are able to fall pregnant just like healthy women.4 Talk to your haematology and gynaecology doctors on a regular basis throughout your pregnancy and make use of all types of support offered to you to ensure you receive the best possible care.

Illustration of colorful speech bubbles on a green background, representing people and conversations.
Illustration of a purple smartphone with various media elements like videos, photos and speech bubbles around it.
Resource hub:
  • Top tips for self-management
  • Your wellbeing diary
  • Set targets that work for you
  • Get the most out of your medical appointments
    1. Kato GJ et al. Nat Rev Dis Primers 2018;4:18010. https://pubmed.ncbi.nlm.nih.gov/29542687/ . Last accessed: 18.09.2023
    2. https://www.kinderblutkrankheiten.de/erkrankungen/rote_blutzellen/anaemien_blutarmut/sichelzellkrankheit/ursachen/. Last accessed: 18.09.2023
    3. https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Expert=232&lng=DE. Last accessed: 18.09.2023
    4. S2k guideline AWMF [Association of the Scientific Medical Societies in Germany] guideline 025/016 "Sickle cell disease", available at https://register.awmf.org/assets/guidelines/025-016l_S2k_Sichelzellkrankheit_2020-12.pdf. Last accessed: 18.09.2023
    The website Realtalk! Sichelzellkrankheit is intended to support you with as many questions as possible about sickle cell disease.