What to Know About ALS and Pregnancy

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While uncommon, it is possible to be diagnosed with ALS (amyotrophic lateral sclerosis) when you are pregnant.

People with preexisting ALS can become pregnant, though this is very rare. When a person is in the early stages of ALS and is pregnant, it typically results in the delivery of a healthy baby.

This article provides an overview of ALS and pregnancy.

A woman talking to her gynecologist

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ALS is a progressive disease, which means that it gets significantly worse over time. Early symptoms may include:

  • Muscle weakness, stiffness, and cramping
  • Balance problems
  • Difficulty chewing or swallowing
  • Changes in speech 

Later symptoms often affect a person’s ability to eat, speak, and move independently. 

ALS and Fertility

ALS affects the nerve cells that control voluntary muscle movement, such as walking or chewing. It is extremely rare to develop ALS during the reproductive years.

The disease does not affect a person’s reproductive, bowel, or bladder functions. It does not appear to impact a person’s fertility or ability to become pregnant.

Is ALS Hereditary?

Certain types of ALS are considered hereditary. It’s estimated that about 90% to 95% of ALS cases are sporadic or occur with no family history. The other 5% to 10% of cases are familial ALS caused by a gene mutation inherited from a family member.

About 66% of people with familial ALS and 10% with sporadic ALS are found to have a gene mutation known to cause ALS. However, for most people with the disease, the exact cause is unknown and thought to be a combination of genetic, environmental, and lifestyle factors. 

Because ALS may be genetic, it’s important to understand your risk of passing the disease on to your child. Your healthcare provider will likely recommend meeting with a prenatal genetic counselor to discuss the risks and to consider prenatal testing. 

ALS and Gestation

ALS affects the motor neurons and does not appear to affect the health and development of a fetus. The birth outcomes for babies of parents with ALS are usually good. 

The main concern for pregnant people with ALS is breathing difficulty. The type of treatment needed will depend on the pregnant person’s disease severity and overall health.

Risks

Being pregnant when you have ALS comes with serious health risks. However, it’s important to note that the baby is not at increased risk of poor birth outcomes.

The most important risk to address is breathing problems. Pregnancy adds to the lungs’ workload. Because ALS causes muscle weakness and atrophy, the respiratory muscles will eventually be affected.

As the baby grows, the uterus presses on the diaphragm, making breathing more difficult. This can cause shortness of breath to worsen. For this reason, pregnant people with ALS require frequent monitoring and lung function tests. 

People with ALS eventually lose the ability to chew and feed themselves. Pregnancy is a time of increased caloric need, so it’s important to work with a nutritionist or dietitian to ensure you can consume enough calories for your growing baby. 

Treatment

It is important to continue to receive ALS treatment during pregnancy. Treatment options may include:

  • Medication: Rilutek (riluzole) is the only ALS oral medication currently approved for use during pregnancy. It reduces damage to motor neurons and may prolong survival. Other drugs may be needed to treat other ALS symptoms.
  • Breathing support: Your healthcare team may suggest using a suction device after meals or for mucus and respiratory exercises for breathing support if you are pregnant with ALS.
  • Physical therapy: Strengthening exercises can enhance independence for as long as possible.
  • Speech therapy: They can help to improve speech and swallowing abilities.
  • Nutritional support: Pregnant people with ALS often benefit from small meals throughout the day. A focus on consuming adequate calories, fiber, and fluids is important. 
  • Prenatal care: It is critical to follow up with your obstetrician regularly.
  • Technology: As ALS progresses, movement and communication are greatly affected. Computer-based speech synthesizers and brain-computer interface systems can help you move and talk with those around you. 

Rilutek (riluzole) has been approved for use during pregnancy but has been linked with an increased risk for low birth weight. It may also lead to liver problems. Talk with your healthcare provider about monitoring while taking this medication.

Concerning Symptoms

With ALS, your symptoms will change over time. Pregnancy can exacerbate breathing problems, so you and your loved ones must monitor any health changes closely.

Most pregnant people with ALS will have a cesarean section (C-section, surgery to deliver a baby) rather than going into labor naturally. Spontaneous labor increases the respiratory demand on the body, and this increased need can be dangerous for those with ALS. Any signs of spontaneous labor, such as regular contractions, must be reported to your healthcare team immediately.

ALS Diagnosis During Pregnancy

ALS affects about 2 to 4 people per 100,000 in the general population. ALS incidence is highest among older individuals and is more common in men than women. It is very rare in pregnant individuals.

ALS and Postpartum

Because ALS does not affect the uterus or reproductive system, the birth outcomes are usually good. Both parent and baby are typically expected to do well throughout labor and birth.

Impact on Recovery

Your recovery process depends on the severity of the ALS disease and your unique birth experience. Many people with ALS will slightly improve their breathing ability after birth now that the baby is no longer pressing on the diaphragm. 

Breastfeeding

It is possible to breastfeed when you have ALS, and lactation is not affected by the disease.

However, breastfeeding with ALS comes with unique challenges. If you are experiencing muscle weakness, you may be unable to hold your baby and will require assistance during breastfeeding. A loved one or healthcare provider can position the baby at your breast, ensure a good latch, and hold the baby during the feeding. 

If you have lost the ability to move, it’s important to have a way to communicate while you are breastfeeding. If you experience pain or need to stop, tell the person assisting you immediately.

Summary

While it is very rare, it is possible to become pregnant when you have ALS. It is also possible to be diagnosed with ALS during your pregnancy. About 5% to 10% of ALS cases are considered genetic.

People with ALS need to participate in genetic counseling before becoming pregnant. During pregnancy, people with ALS are at an increased risk of breathing problems. Regular follow-ups with your ALS medical team and obstetrician are vital. 

A Word From Verywell

ALS is a devastating diagnosis, and there is no cure. If you learn that you have a progressive neurological disease while pregnant, you may feel you can’t handle the stress of it. While this is very rare, know that you are not alone. Start by reaching out for support from your medical team, family, friends, and community. Meeting with a support group or therapist may also be helpful.

Frequently Asked Questions

  • Can someone with ALS get pregnant?

    Yes, a person with ALS can become pregnant. However, becoming pregnant with ALS is very rare.

  • How to breastfeed with ALS?

    It is possible to breastfeed when you have ALS, and lactation is not affected by the disease. If you are experiencing muscle weakness, make sure you have a support person to hold the baby and assist you in helping your baby latch.

9 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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  6. ALS Association. Is ALS genetic?.

  7. American Academy of Pediatrics. Prenatal genetic counseling.

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  9. Ali A, Mowat A, Jones N, Mustfa N. A case of successful pregnancy managed in a patient living with motor neurone disease for more than three years. BMJ Case Rep. 2022;15(5):e248872. doi:10.1136/bcr-2022-248872

By Carrie Madormo, RN, MPH
Carrie Madormo, RN, MPH, is a health writer with over a decade of experience working as a registered nurse. She has practiced in a variety of settings including pediatrics, oncology, chronic pain, and public health.