What is peripartum cardiomyopathy?
Peripartum cardiomyopathy is a serious condition that damages your heart muscle and prevents your heart from pumping blood to the rest of your body. This condition affects people in the last month of pregnancy or up to five months after delivery. For that reason, it’s also called postpartum cardiomyopathy or pregnancy-associated cardiomyopathy. It can occur at any age but is most common in people over 30 years old.
Research on cardiomyopathy is extensive. But there’s still a lot we don’t know about peripartum cardiomyopathy, which is a rare form.
Peripartum cardiomyopathy is hard to diagnose because the symptoms overlap with those of a typical pregnancy. So, you might not even notice anything is wrong until the condition gets much worse. Because peripartum cardiomyopathy can be so tough to identify, it’s especially important to know if you have any risk factors. An early diagnosis is key for getting proper treatment and greatly increases your chances of a smooth recovery.
How common is peripartum cardiomyopathy?
Researchers around the world have slightly different definitions and diagnostic criteria. So, it’s hard to say exactly how many people have this condition. Estimates vary widely both in the U.S. and globally. Depending on where you live, cardiomyopathy might affect as few as 1 in 50,000 pregnancies or as many as 1 in 100.
Research shows more people are affected in Africa and Asia, with the exception of Japan. This condition is most common in Nigeria and Togo. In the U.S., peripartum cardiomyopathy affects somewhere between 1 in 1,000 and 1 in 4,000 pregnancies. Estimates show a higher prevalence in the southern U.S. compared with other regions.
Peripartum cardiomyopathy affects people who are Black more often and more severely than those who aren’t. Typically, people who are Black get diagnosed at a younger age (27 compared with 31). They also get diagnosed later in the postpartum period, when the problem has gotten more serious. People who are Black also have more severe heart damage and reduced heart pumping ability from peripartum cardiomyopathy. As a result, they face more serious complications and a higher risk of dying.
How does peripartum cardiomyopathy affect my body?
If you have peripartum cardiomyopathy, your heart can’t pump blood as well as it should to the rest of your body. That’s because peripartum cardiomyopathy affects one of the chambers of your heart called the left ventricle. Your left ventricle has the important job of pumping oxygen-rich blood throughout your body. But peripartum cardiomyopathy damages your left ventricle and lowers its productivity.
You might hear your healthcare provider use the term “left ventricular ejection fraction” (LVEF). This refers to how well your left ventricle can pump blood out of your heart. Your LVEF is described as a percentage, and a higher number is better. Normally, your LVEF is 55% to 70%. Peripartum cardiomyopathy reduces your LVEF to less than 45%. The lower your LVEF, the more serious your condition.
While anyone with peripartum cardiomyopathy can have drastically reduced LVEF, people who are Black are more likely to have a really low (less than 30%) LVEF compared with those who aren’t Black.
As your left ventricle gets weak and tired, it can’t pump blood as efficiently to your lungs, liver and other organs that rely upon it. This slowdown affects your whole body. It leads to heart failure and raises your risk of blood clots and thrombosis.
Symptoms and Causes
What are the symptoms of peripartum cardiomyopathy?
The symptoms of peripartum cardiomyopathy are easy to miss because many of them are similar to what you feel from being pregnant. But because the condition is so serious, it’s important to watch for the following symptoms:
- Shortness of breath (dyspnea) — especially when trying to sleep, when lying down or with physical activity.
- Swelling (edema) of your feet and ankles.
- Heart palpitations.
- Dry cough.
- Needing to urinate more often at night (nocturia).
- Swollen neck veins.
- Low blood pressure (hypotension) or blood pressure that drops suddenly when you stand up.
If you have any of these symptoms, call your healthcare provider right away to talk about how you’re feeling. If you have chest pain, heart palpitations, fainting or notice any new symptoms, call 911 or your local emergency department.
Peripartum cardiomyopathy usually begins in the last month of pregnancy or later. But in some cases, it can start sooner. In other cases, pregnancy can put extra strain on your heart and cause a previously undiagnosed heart condition to get worse. So it’s important to track symptoms throughout your pregnancy, not just in the final weeks.
What causes peripartum cardiomyopathy?
Researchers don’t know what causes peripartum cardiomyopathy. In the medical world, conditions with an unknown cause are called “idiopathic.” Research continues to explore this condition and its causes. Possible causes include hormonal changes during pregnancy and other conditions like preeclampsia.
Diagnosis and Tests
How is postpartum cardiomyopathy diagnosed?
Researchers describe peripartum cardiomyopathy as a “diagnosis of exclusion.” This means your healthcare provider has to rule out every other possible cause of heart failure before diagnosing you with peripartum cardiomyopathy.
If you meet all three of these clinical criteria, your provider will diagnose you with peripartum cardiomyopathy:
- You develop heart failure near the end of pregnancy or within five months of delivery.
- Your provider can find no other cause for your heart failure.
- Your left ventricular ejection fraction (LVEF) is less than 45%.
To reach a diagnosis, your provider will talk with you to learn about your health history and family history. The more you can share, the better, since diagnosing peripartum cardiomyopathy is a lot like putting together a large puzzle. Your provider needs as many pieces as possible to complete the picture and diagnose you. Those pieces include your symptoms, your health history, any prior heart conditions, and details about family members with heart disease.
Normally, puzzles are a slow and relaxing activity, but in this case, your provider needs to solve the diagnostic puzzle as fast as possible. That’s because if you’re diagnosed late, you’re more likely to have serious complications like continued heart problems. Early diagnosis reduces your risk of dying from peripartum cardiomyopathy and allows you to get treatment as soon as possible.
While peripartum cardiomyopathy has always been challenging to diagnose, recent research has shown that COVID-19 may further complicate diagnosis. COVID-19 infection can cause myocarditis and cardiomyopathy. We’re still learning how COVID-19 impacts pregnant people and how to tell the difference between peripartum cardiomyopathy and COVID-19-related cardiomyopathy.
Tests to diagnose peripartum cardiomyopathy
There’s no specific test designed to diagnose peripartum cardiomyopathy. Instead, your provider will use other tests along with the information you provide. Clinical judgment is essential for making the right diagnosis. Your provider must rule out anything else that’s causing your symptoms. Your provider will perform a physical exam to look for signs of extra fluid in your body. Then, you’ll have a series of tests including:
- Blood tests to check for anemia, electrolyte imbalances and elevated levels of B-type natriuretic peptide (BNP).
- Electrocardiogram (ECG/EKG) to check for arrhythmia.
- Chest X-ray to look for signs of heart failure.
- Echocardiogram (echo) to evaluate your heart’s anatomy and function and show any congenital heart disease or valvular diseases. The echo will also show your left ventricular ejection fraction (LVEF), which is an essential part of your peripartum cardiomyopathy diagnosis.
- Cardiac MRI to screen for other etiologies of heart failure such as sarcoidosis.
- Myocardial biopsy is rarely done to check for myocarditis.
These tests will reveal any heart problems that were present before your pregnancy. Some people have heart problems for years and don’t even know until they start having symptoms during pregnancy. Your test results will help your provider make an accurate diagnosis. If your provider can’t find any other cause for your symptoms, you’ll be diagnosed with peripartum cardiomyopathy.
Management and Treatment
How is peripartum cardiomyopathy treated?
Your treatment will focus on managing your heart failure symptoms and helping your heart recover. If you’re diagnosed while pregnant, your provider will make sure any medications are safe for your baby. Your provider will talk with you about treatment options and discuss possible side effects. You’ll also likely work with a team of specialists who can offer advice on high-risk pregnancy and the impact of heart disease on pregnancy.
Treatment for peripartum cardiomyopathy involves the use of medications similar to other types of heart failure. However, the caveat is that some medications, including ACE inhibitors, ARBs, ARNI, MRAs and SGLT2 inhibitors, aren’t safe to use during pregnancy, as discussed in the section below. Common medications include:
- Angiotensin-converting enzyme (ACE) inhibitors.
- Angiotensin II receptor blockers (ARBs).
- Angiotensin receptor neprilysin inhibitors (ARNIs).
- Mineralocorticoid receptor antagonists (MRAs).
- Sodium-glucose cotransporter-2 (SGLT2) inhibitors.
Side effects vary based on the treatment and whether or not you’re pregnant at the time. Taking beta-blockers while pregnant may cause your baby to have a smaller birth weight or conditions such as hypoglycemia, bradycardia or heart block. Some medications, including ACE inhibitors, ARBs, ARNIs, MRAs and SGLT2 inhibitors, aren’t safe to use during pregnancy. But, they’re generally safe to use while breastfeeding since only small amounts pass into your breast milk. It’s important to talk with your provider about the timing, risks and side effects of each medication.
Depending on how your heart is functioning, you may need treatment beyond medications. These treatments include:
- A cardiac device like a wearable or implantable cardiac defibrillator.
- A left ventricular assist device.
- Heart transplant. This is the last resort when other treatment options have failed. It’s usually for people who are diagnosed late and have a very low left ventricular ejection fraction (LVEF).
Can peripartum cardiomyopathy go away on its own?
Peripartum cardiomyopathy is a serious and potentially life-threatening heart condition that requires medical care. It’s important to get diagnosed right away so you can get the care you need. Because peripartum cardiomyopathy gets worse the longer it goes untreated, it’s essential to talk to your provider if you have any symptoms or risk factors.
What are the risk factors for developing peripartum cardiomyopathy?
Research has identified many risk factors for peripartum cardiomyopathy. You might have some before you’re pregnant, while others arise during your pregnancy.
Risk factors prior to pregnancy
- Being over age 30.
- High blood pressure (hypertension).
- Selenium and zinc deficiency.
- Substance use disorder.
Risk factors related to pregnancy
- Being pregnant for the first time.
- Being pregnant with twins or triplets.
- Prior diagnosis of peripartum cardiomyopathy.
- Using assisted reproductive technology.
Complications during pregnancy
- Preeclampsia and eclampsia.
- Thyroid disease.
- Asthma or autoimmune disease flare-up.
- Extended use of medicine to delay delivery if you have preterm contractions.
Research has shown that the more risk factors you have, the more likely you are to develop peripartum cardiomyopathy. This is called the “multiple hit” model of peripartum cardiomyopathy. The risk factors add up to pose an even greater threat than one would on its own.
Research has also shown that people who are Black are diagnosed with peripartum cardiomyopathy at disproportionate rates. And once diagnosed, they’re more likely to suffer severe outcomes.
Is postpartum cardiomyopathy hereditary?
Peripartum cardiomyopathy may be hereditary, but research hasn’t proven this link yet. About 15% to 20% of people with peripartum cardiomyopathy have genetic mutations that can cause cardiomyopathy. Researchers are forming theories about what this means. One idea is that if you have this genetic mutation, you may not know it and feel totally fine until you’re pregnant. Then, the stress of pregnancy and delivery might trigger cardiomyopathy symptoms.
Higher rates of peripartum cardiomyopathy in people who are Black as well as in some African nations may suggest a genetic component, too. Future research will explore the role of genes and family history in raising a person’s risk for peripartum cardiomyopathy.
How can I prevent peripartum cardiomyopathy?
The best way to prevent peripartum cardiomyopathy is to do whatever you can to keep your heart healthy. While some risk factors can’t be avoided, others can be managed through lifestyle actions such as:
- Eating a heart-healthy diet.
- Getting regular exercise.
- Avoiding cigarettes and alcohol.
- If you have obesity, working with your healthcare provider to find strategies to lower your weight in a healthy way.
- Getting your blood pressure checked regularly and treated if needed.
If you had heart failure during a previous pregnancy, talk with your healthcare provider about whether or not it’s safe to attempt another pregnancy.
Outlook / Prognosis
What can I expect if I have peripartum cardiomyopathy?
If you’ve been diagnosed with peripartum cardiomyopathy, you’ll work closely with your healthcare provider and a team of specialists to monitor your health. If you’re still pregnant, your health team will monitor your condition and the condition of your unborn baby (fetus). They’ll also create a plan for your type of delivery. If your heart failure is stabilized, your provider will likely prefer you have a vaginal delivery. You may need interventions such as an epidural, episiotomy or the use of forceps.
However, people with peripartum cardiomyopathy are more likely to have a Cesarean delivery (C-section) or preterm birth. It’s important to know your options and risks and talk about them with your provider.
After delivery, you’ll continue to work with your provider to manage your care and treatment. How you feel and how quickly you recover depend on many factors, but the most important factor is your left ventricular ejection fraction (LVEF). Research shows that if your LVEF is less than 30% when you’re diagnosed, you’re at a higher risk of serious complications. It’s important to keep your medical appointments and complete treatments to try and get your heart back to full strength.
Is peripartum cardiomyopathy permanent?
For some people, peripartum cardiomyopathy becomes permanent. For others, treatment can manage the symptoms and restore some or all heart function.
You’re considered fully recovered from peripartum cardiomyopathy if your LVEF reaches at least 50% to 55%. Most studies measure this number six months after diagnosis. Recovery varies widely by region and ethnicity. Recovery rates in the U.S. range from 44% to 63% after six months, while recovery rates in Pakistan, the Philippines, Nigeria and South Africa are just 21% to 36%.
For people who are Black, recovery is harder than it is for people who aren’t Black. One study found that 4 in 5 people who are Black do not fully recover from peripartum cardiomyopathy (they have lasting effects), and 1 in 10 do not survive.
If you recover from peripartum cardiomyopathy, it’s still important to monitor your health and work closely with your healthcare provider. That’s because 1 in 5 people who recover from peripartum cardiomyopathy have a heart failure relapse later on. Also, even if you fully recover and your LVEF returns to a healthy level, you may still feel long-term effects like reduced exercise capacity.
Your provider will evaluate your numbers and advise you on how to manage any long-term effects. You might be wondering how long a person can live with peripartum cardiomyopathy. It depends on your individual condition, how well the treatment works and many other factors related to your overall health. By working closely with your provider, you can strengthen your heart, lower your risk of heart failure relapse and live a healthy and happy life.
How do I take care of myself if I have peripartum cardiomyopathy?
The most important thing you can do to take care of yourself is to visit your healthcare provider regularly. After you’re diagnosed, your provider will work with you to create a care plan. You’ll have follow-up appointments and treatments as you also make lifestyle changes. It’s essential that you follow this plan and call your provider to talk about any problems or changes you notice.
Some simple daily changes may include:
- Lowering how much salt you eat. Find options to add flavor without salt.
- Weighing yourself to watch for fluid buildup. If you gain 3 to 4 pounds over a couple of days, call your provider.
- Quitting smoking.
- Drinking less or avoiding alcohol completely.
If you're breastfeeding (chestfeeding), talk with your provider about any risks, such as passing medicine to your baby through breastmilk. Usually, the benefits of breastfeeding — like bonding with your baby — outweigh the risks. You may want to work with a post-pregnancy counselor to talk about your options and decide what’s best for your own situation.
Conversations about mental health
Peripartum cardiomyopathy can be a life-changing diagnosis. You may feel a range of emotions, all while you’re bonding with your baby and maybe even learning how to be a parent for the first time. It’s a lot to handle at once.
Research shows that stress from peripartum cardiomyopathy raises your risk of developing mood disorders. More than 50% of people with peripartum cardiomyopathy develop generalized anxiety or experience anxiety over the condition of their heart.
While about 1 in 10 postpartum people in the U.S. have postpartum depression, those with peripartum cardiomyopathy face a much higher risk. After a peripartum cardiomyopathy diagnosis, about 1 in 3 people develop depression.
If you feel upset, confused or overwhelmed, you’re not alone. If you aren’t already working with a counselor or therapist, ask your provider to recommend one. Build your team of experts to help you get through this challenging time.
Can I get pregnant again if I have peripartum cardiomyopathy?
Peripartum cardiomyopathy has a high recurrence rate. That means once you have it with one pregnancy, you’re more likely to have it again with any future pregnancies. About 1 in 3 people who are diagnosed with peripartum cardiomyopathy will develop it with a later pregnancy, too. Even if you fully recover, you’re still at a higher risk of heart failure during future pregnancies.
Your healthcare provider will talk with you about whether or not it’s safe to have another pregnancy. If it’s too risky, you may need to explore options for contraception. It’s important to discuss these options with your provider. You’ll need contraception that doesn’t contain estrogen because estrogen therapies raise your risk of blood clots and thrombosis.
If you do have another pregnancy, you’ll need close monitoring and regular checkups to catch any early signs of heart failure.
A note from Cleveland Clinic
Peripartum cardiomyopathy is a life-changing diagnosis that can feel confusing or overwhelming. It’s OK to have many questions and not know the answers right away. Your team of healthcare providers will help you every step of the way and do everything possible to help your heart get stronger. If you’re pregnant and have any of the risk factors for peripartum cardiomyopathy, talk with your provider. An early diagnosis is vital for getting you the treatment you need and reducing the risk of serious complications for you and your baby.
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