Pregnancy and SMA

Little is known about pregnancy and SMA, as studies are mainly based on reports that include a small number of patients. SMA can pose unique challenges in addition to the usual pregnancy symptoms and potential adverse pregnancy outcomes. If you are a woman of childbearing age with SMA and are planning to become pregnant, or if you are currently pregnant, please make sure that your healthcare provider is aware.

Does pregnancy have an effect on SMA?

Studies have shown that women with SMA more commonly experienced preterm (early birth) and C-section deliveries. About two-thirds (66%) of pregnant women with SMA reported increased weakness during pregnancy, which in some cases persisted even after delivery. Being pregnant can also make some existing symptoms of SMA more difficult to cope with.

Symptoms of SMA can make childcare challenging too. Therefore, pregnant women with SMA have the added complication of having to think ahead about how they will care for their children in the future. However, it is possible that women living with SMA who are interested in having children could have a normal pregnancy and healthy children. Managing pregnancy with SMA is a collaborative effort. A successful pregnancy and delivery with SMA can be managed by planning ahead and getting the support of friends, family, and healthcare providers.

Is my baby at risk of getting SMA?

SMA is a rare genetic (inherited) condition of the nerves and muscles. A common concern of expectant parents with SMA is that their child may be more likely to be diagnosed with SMA. People with SMA are either missing part of the SMN1 gene or have a changed (mutated) gene. We can think of genes as the instruction book for what our bodies look like and how they work. To be diagnosed with SMA, a person must have a mutation in both copies of the responsible gene in each cell. Prenatal tests can help determine if your child may be diagnosed with SMA. Your healthcare provider will be able to provide more information about the prenatal tests and the potential effect of risdiplam on your child.

How will SMA treatment affect my baby?

All pregnant women are advised to think carefully about any substances (for example, foods, drinks, and medications) they put into their body. This is because some substances can move from the mother’s bloodstream directly into the baby’s bloodstream (through the placenta). It is important to discuss all medications that you are taking with your healthcare provider when you are pregnant, including herbal medicines. Your healthcare provider will weigh the risks and benefits of any medications or treatment that you are currently taking to help you decide what to take during your pregnancy.

In many cases, when a woman takes a medication, the effect of that medication on the health of her baby is often not known. This is because pregnant women are often prohibited from participating in studies that evaluate potential new medications. Therefore, pregnancy registries are studies conducted to learn more about medications and their effects on pregnant women and their babies. The aim is to gather information that will support women and their healthcare providers in making informed decisions about their treatment before and during pregnancy in the future.

It is not known at this time if risdiplam could harm your unborn baby. Risdiplam is not approved for use in pregnancy and should not be taken by women who are pregnant or trying to become pregnant. Women with SMA are advised to stop taking risdiplam right away and call their healthcare provider if they think they are pregnant.

For this registry, we would like to ask you to share your pregnancy information if you have taken risdiplam less than 1 month before getting pregnant or anytime during your pregnancy. Sharing your pregnancy information with this registry could help provide healthcare providers with information as to whether taking risdiplam could have an effect on pregnancy or the health and growth of babies.

Learn about the Evrysdi Pregnancy Registry here.

Where can I go for help and advice?

Your healthcare provider should be the first source of information about your pregnancy and SMA. In addition, there are SMA patient advocacy groups where you can seek information from people who may have experience with SMA and pregnancy. Your healthcare provider may be able to help you contact a group that is active in your local area.