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.
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.
Before conception/pregnancy
Adapting your medication
Genetic counselling
During pregnancy
Close monitoring and check-ups
What you can do yourself
Prenatal diagnostics
After the birth
Monitoring after the birth
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
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.
- Top tips for self-management
- Your wellbeing diary
- Set targets that work for you
- Get the most out of your medical appointments