TSC is a genetic condition, which means that some people living with TSC will pass the condition onto their children. However, for around 2 in 3 people with TSC, neither parent has the condition.

TSC is often suspected during a pregnancy when growths on the baby’s heart (called ‘cardiac rhabdomyomas’) are found during an ultrasound scan. Cardiac rhabdomyomas and other clinical signs of TSC are usually detected in late pregnancy and can understandably come as a shock.

Being told that your baby might have TSC can make you feel very alone or confused. You might feel grief, sadness or even anger that your pregnancy is not going as you had expected and planned. It’s natural to have a range of feelings, and there is no right or wrong way to feel during this time.

No matter how you feel or what your next steps are, it’s important to allow yourself time to adjust to the news that your pregnancy could be different to how you imagined.

If TSC is suspected in an unborn child, a diagnosis can be confirmed through genetic testing. It typically takes up to six months to receive genetic testing results. However, when TSC is suspected during pregnancy rapid, genetic testing might be used – on the NHS this cuts the time you have to wait for a result down to around 2-3 weeks.

The fetal medicine team at your hospital is there to support you and talk you through your options when TSC is suspected during your pregnancy. You may also be referred to genetic services, where a clinical geneticist or genetic counsellor can talk you through what a potential diagnosis of TSC could mean for you and your family.

You can find a list of NHS genetic services in the UK and your catchment area for a referral on the Genetic Alliance UK website. Your hospital should be able to help with this too.

You can read more about TSC and genetics here, and more about family planning and TSC here.

If you’re told that your unborn child has TSC, your doctors may include the option of ending the pregnancy (known as ‘termination’). This can be heartbreaking, and often completely unexpected.

Deciding whether to continue with your pregnancy or not can be incredibly daunting and difficult. The decision is individual to everyone, and there is no correct answer. You should not feel pushed by anyone to choose a certain path, but it is important to feel that you have all of the information that you need.

You may find it helpful to learn more about TSC, but this should be done at your own pace as this may feel overwhelming. You might find it helpful to read  stories of individuals and families living with TSC.

An added hurdle with TSC is that the condition affects everyone differently. This means that the extent to which TSC will impact on the future life of an unborn child is difficult to predict. In addition, if a parent has TSC, the way the condition affects a child may be different. This variability of TSC can lead to lots of ‘What ifs’ and unknowns as part of family planning and pregnancy, because an unborn child with TSC might have very few support needs, or very major support needs (or anything in-between).

When you’re deciding what to do next, you might find it helpful to contact the charity Antenatal Results and Choices (ARC). ARC are focused on providing support and information for people going through these situations, before, during and after a prenatal genetic diagnosis. You can contact their helpline on 020 7713 74 86 (Monday – Friday 10am – 5.30pm) or email info@arc-uk.org for an evening call on Tuesday or Thursday 8pm – 10pm.

If you choose to continue your pregnancy it is likely that the baby will need to be monitored by the fetal cardiology team to check the growth of the cardiac rhabdomyomas. The fetal cardiology team and the genetics team will liaise with your local antenatal and neonatal team to ensure continuing care after the birth of your child.

During your pregnancy, you might want to read more about TSC and what life with TSC can be like. This could include our pages on early years and childhood, and living well.

After taking in information about TSC, and discussing options with the hospital, your doctors and loved ones, you might decide to end the pregnancy. Bereavement, loss and grief can be very powerful during this time, particularly when the choice that you’ve made has been unexpected.

You can read more about the options that might be given to you, should you choose to end a pregnancy, on the British Pregnancy Advisory Service’s website.

It’s the TSA’s view that everyone affected TSC is part of the TSC community, including those who have to take the incredibly difficult decision to end a pregnancy. Whatever your circumstances should you choose to end your pregnancy, the TSA continues to be here for you and your loved ones, to provide a listening ear or practical information.

It’s important to give yourself and loved ones time to process loss and grief. Your hospital should provide ways to speak to a bereavement midwife. Bereavement midwives can not only provide direct support and information, but can also ‘translate’ a lot of the things that doctors might tell you, into ways that are clearer and easier to understand.

Parents often talk about the stigma associated with ending a pregnancy and the difficulties talking about it, particularly to family members and children. Every situation is different, and the reasons for ending a pregnancy unique to everyone.

You may find ARC’s resources helpful, including their forum to speak to other parents who have lost a baby following a prenatal diagnosis, or their guide to talk to children about the loss of a baby.

You can also find further bereavement support through our page on bereavement.

When you’ve been through a pregnancy where TSC was suspected or diagnosed, preparing for another pregnancy can be complex and even more emotional than usual. This is true no matter what decisions you made with your previous pregnancy.

The thought of a subsequent pregnancy, after all of the emotions and challenges experienced in your prior pregnancy, can be a major hurdle. Deciding whether to try to become pregnant again or not is a personal decision, with no right or wrong choice.

A referral to genetic services to talk to a clinical geneticist or genetic counsellor can be helpful when considering or planning for another pregnancy, as they can advise you on your options. You might also want to proactively think about whether you might want to access specific antenatal tests for TSC in a future pregnancy, before you get pregnant.

You might find our TSC and family planning page helpful, if you do decide to plan another pregnancy.