Atypical Hemolytic Uremic Syndrome & Pregnancy: Early Diagnosis Means Better Outcomes

Atypical hemolytic uremic syndrome (aHUS) is a rare condition which can be sparked by pregnancy, although it can also occur without it. Essentially, if you are genetically predisposed to the condition, the physiological changes which the body goes through during pregnancy can lead to the presence of the condition. The disease can also be exacerbated by a pregnancy.

aHUS causes blood clots in the kidneys, which can increase complications during the pregnancy and birth. However, that doesn’t mean people with aHUS can’t deliver perfectly healthy babies.

The Risks

The best thing someone can do is get diagnosed early.

Like all rare conditions, diagnosis is often slow for aHUS. Diagnosis is especially challenging for this condition because the mutation is most often sporadic. Patients have no family history of aHUS, and the diagnosis comes as a shock.

That said, it can be inherited. Therefore, if you know you have the condition, you should have a conversation with a genetic counselor and your doctor regarding what risks your child has for inheriting the disease. Genetic testing can be used to see whether or not your child will inherit aHUS. Tests include amniocentesis, as well as chorionic villus sampling.

With an early diagnosis and the proper supportive care during pregnancy and birth, patients can deliver healthy children.

The potential risks of aHUS include:

  • Bleeding complications
  • Miscarriage
  • Kidney damage
  • Kidney failure

However, researchers still aren’t sure whether or not pregnancy itself can increase the progression of damage to the kidneys.

What to Do if Diagnosed?

If you know you have aHUS, you should establish a line of open communication with your doctor. Some medications may cause harm to the child, and all treatment should be discussed with a medical professional. Additionally, due to the potential complications, pregnant women with aHUS should be monitored with special care.

Presentation and symptoms of aHUS will vary by the patient, and therefore the specific precautions needed will be different for individuals. For those with severe symptoms, bed rest may be necessary.

One thing patients can do to help doctors properly assess their condition and needed treatment is to keep a log of all of the symptoms they are experiencing.

After birth, breastfeeding should also be discussed and whether or not treatment should be altered as a result of this choice.

You can read more about aHUS during pregnancy here.


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