aHUS and Pregnancy

Atypical hemolytic uremic syndrome (aHUS), a rare disease in which small blood clots form in the kidneys, can be caused or exacerbated by pregnancy, which is sometimes called p-aHUS.

For patients who already have aHUS, the disease greatly increases the risks of complications during pregnancy.

If you have aHUS, discuss the risks of pregnancy with your doctor and any potential harm any prescribed medications can cause to the fetus.

Can women with aHUS have healthy pregnancies?

Many women with aHUS have safely delivered healthy babies. However, life-threatening complications can occur during pregnancy and childbirth, so women with the disease should be under special care.

What are the aHUS-related risks during pregnancy?

For women who are genetically predisposed to developing aHUS, the physiological changes of pregnancy can lead to aHUS.

For women with aHUS, the disease greatly increases the risk of bleeding complications and miscarriage during pregnancy. Early diagnosis and supportive care are key but because aHUS is rare and testing can be difficult, it may take time for doctors to diagnose it.

One of the complications of aHUS is kidney damage and kidney failure. It’s unclear whether pregnancy speeds the progression of kidney disease in patients with aHUS.

Can my baby inherit aHUS?

Most cases of aHUS occur sporadically, meaning that patients usually have no family history of the disease. However, aHUS can also be inherited, either in a dominant or recessive pattern. If you have aHUS, you should discuss the risks of your baby inheriting aHUS with your doctor and a genetic counselor.

Can I find out while pregnant if my baby will have aHUS?

In some cases, you can find out before your child’s birth if he or she will have aHUS through genetic testing such as amniocentesis and chorionic villus sampling.

Amniocentesis involves inserting a needle into the uterus to collect a small sample of amniotic fluid (the fluid that surrounds and protects the baby during gestation).

Chorionic villus sampling involves taking a sample of the placenta (which contains the baby’s DNA). Doctors can collect this tissue through your cervix or abdomen.

Are there risks to genetic testing?

Every medical procedure has risks, so discuss with your doctor any risks specific to your condition.

What pregnancy precautions should I take if I have aHUS?

The specific precautions you may need to take will depend on your symptoms and their severity. Some women may need to be on bed rest during their pregnancy.

You should discuss with your doctor whether your medication will need to be changed during your pregnancy.

Keep a detailed log of your symptoms to help your care team determine whether any symptoms require additional treatment.

What happens after the baby is born?

Discuss with your care team whether you will be breastfeeding and if your medications will need to be changed as a result.

You may want to discuss with your doctor whether your baby should be tested for aHUS.

Last updated: April 13, 2020

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AHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.