Pregnancy when you have a muscle wasting condition

Many people with muscle wasting conditions have successful, healthy pregnancies. But the chances of you and your baby having problems can vary, depending on your diagnosis and symptoms.

Your healthcare team can explain how pregnancy might affect you. They can also talk to you about what support you may need during and after pregnancy.

The information on this page is for people who have a genetic muscle wasting condition.

We also have information pages about how muscle wasting conditions are inherited, carrier testing when you’re planning a pregnancy, and genetic testing during pregnancy.

If you’re planning on having a baby, it’s important to speak to your neuromuscular team first. They can explain any risks and help you get ready for pregnancy.

They can talk to you about:

• Whether your muscle wasting condition or treatment might affect your chance of getting pregnant
• How pregnancy may affect your muscle wasting condition
• How your condition may affect the pregnancy and birth
• Whether to carry on taking your medication during pregnancy – some medicines are safe to take during pregnancy, but others may harm the baby

There are other things everyone can do to increase their chance of having a healthy pregnancy. The NHS has information about the importance of a healthy lifestyle and folic acid supplements.

You and your partner may be worried about passing a muscle wasting condition on to your baby. Some conditions can be diagnosed during pregnancy. Or some people may have a type of fertility treatment to avoid passing on a genetic condition. If you’d like to find out more about these options, your GP can refer you for genetic counselling before you get pregnant. We have more information on our genetic tests during pregnancy page.

Sometimes, a pregnancy is not planned. If you find out that you’re pregnant, speak to your neuromuscular team, midwife, and GP as soon as you can. It’s important that everyone involved in your care understands how your condition may affect your pregnancy and what support you may need.

Different muscle wasting conditions can affect pregnancies in different ways. Even if the baby does not have a muscle wasting condition, some conditions in the mother may affect how the baby develops in the womb. Other conditions do not usually cause any problems. Some conditions are more likely to cause pregnancy problems if they’re not well controlled.

Pregnancy can affect the symptoms of some muscle wasting conditions. For example, some people find that muscle weakness gets worse. This can happen because pregnancy puts more physical strain on the body, changes hormone levels, and increases energy needs. This may get better after the birth but does not always.

Other possible symptoms include tiredness, pain, and balance problems. These are common in people without muscles wasting conditions as well. But having these symptoms on top of muscle weakness can be difficult for people with muscle wasting conditions. Thinking ahead and planning ways to manage any symptoms can help.

If you have reduced mobility during pregnancy, your healthcare team may suggest medication to lower the risk of blood clots. They can also recommend mobility aids such as rollators, transfer aids, or bed rails to help you stay safe and comfortable.

If your condition affects your heart, you may need extra checks during pregnancy. If your condition affects your breathing, you may need regular lung function checks. Your team will use these results to help plan for labour and birth.

Your neuromuscular team can help you understand how your muscle wasting condition may affect you and your baby. They will work closely with you and your antenatal (pregnancy) team. Together, you will make a plan for your pregnancy and the birth. Tell your healthcare team about any new or worsening symptoms during pregnancy.

It’s important that your maternity team know about your muscle wasting condition. They should work with you to make a plan for the labour and birth. This should be recorded in your maternity notes.

Your midwife will give you a paper or electronic version of your notes. Keep these with you at all times in case you need medical help at a different hospital.

Where you give birth is your choice. But your maternity team may advise you to have your baby in hospital. This is because there’s medical support for you and your baby during labour and after the birth.

Many people with muscle wasting conditions have an uncomplicated labour and birth. Depending on their condition, some people may be more likely to have a premature birth or need medical help during labour.

Some muscle wasting conditions also affect the womb. This can lead to ongoing bleeding after the birth, which may need treatment in hospital.   

If you have breathing difficulties, your team may recommend using non-invasive ventilation (such as a mask) during labour to support your breathing.

Premature birth

Some muscle wasting conditions can increase the chance of giving birth before 37 weeks of pregnancy. This is called premature or preterm birth. If you know there’s a chance of giving birth early, your healthcare team may offer you medicines to slow down or delay labour.  

Assisted birth

How you give birth is your choice, but your maternity team can give you advice about this. Most muscle wasting conditions do not affect the womb (uterus) muscles, and many people will be able to push their baby out. Your midwife or doctor may use forceps or suction to help deliver your baby if needed. This is quite common in people without muscle wasting conditions as well and may be unrelated to your muscle wasting condition.

C-section

Your maternity team may advise you to have a planned c-section (caesarean). This is an operation to deliver your baby through a cut across your lower tummy. They may suggest this if:

• Your abdominal or womb muscles are weakened
• There’s a chance you may have problems pushing the baby out
• You have other health problems, such as a heart problem

You can choose to have a planned c-section if you want to. It’s important to talk to your neuromuscular and maternity teams early so your preferences are included in your birth plan.

If there’s a problem during pregnancy or labour, you may need an emergency c-section.

If you have breathing problems, you may need help to breathe during and after a c-section. This may be through a mask or through a tube connected to a machine called a ventilator.

The NHS has general information about c-sections.

Pain relief

While you’re pregnant, speak to your maternity team about what pain relief you may want during labour. They will make sure your maternity notes include details of which anaesthetics you’re able to have.

If you have a c-section, you will usually have a spinal anaesthetic. This is an injection into your back that numbs you from the waist down. You’ll be awake during the operation but not able to feel any pain.

If there are complications, you may need a general anaesthetic. You will be asleep during the operation and not able to feel anything.

Some anaesthetic drugs are not suitable for everyone. You can read more about this on our anaesthetics and muscle wasting conditions page.

Hormone changes and tiredness can worsen the symptoms of some muscle wasting conditions. These symptoms may get better a few weeks after the birth, or they may last longer. It’s important to tell your neuromuscular team about any new or worsening symptoms.

If your symptoms got worse during pregnancy, you may find these improve after giving birth. But in some people, these symptoms may not get better.

Your healthcare team can help you plan how to care for and feed your baby. Many people will be able to breastfeed if they choose to. But if you’re taking medicines that could pass into breastmilk, you may need to time your feeds carefully or use formula.  

It’s a good idea to think about what support you might need after the birth. For example, some baby equipment can be adapted to make it easier for you to use. You could also ask family or friends to help you with daily tasks.

The following organisations have information about pregnancy:

Enabled2parent gives information, advice and support to parents with disabilities or additional needs

Tommy’s gives midwife-led advice for parents before, during, and after pregnancy