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Ebstein's Anomaly in Children

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Your new baby’s skin looks bluish. And their breathing seems too fast and ragged. Now you’re worried — and wondering what’s going on.

These symptoms are warning signs. They mean your baby may have been born with a heart condition. One that triggers these symptoms is a rare heart valve abnormality called Ebstein’s anomaly. Left untreated, it can cause an enlarged heart, irregular heartbeat and even heart failure.

Thinking about this may make you feel like your world has turned upside down. Will your child be OK? What kind of future will they have? Cleveland Clinic’s pediatric heart experts understand how unsettling this diagnosis can be. That’s why we’re here. We listen to your concerns and answer your questions. And we help you know what to expect next.

Why Choose Us for Ebstein’s Anomaly in Children Care?

Caring approach:

When your child comes to Cleveland Clinic Children’s, you can rest easy knowing they’re in good hands. Our experienced team treats your little one with the same care and compassion as if they were one of our own. We do what it takes to improve their quality of life and treatment results, always keeping your family in the loop.

Collaborative care:

Congenital heart conditions like Ebstein’s anomaly may require treatment and surgeries over your child’s lifetime. Our team of expert pediatric providers will smoothly move your child’s treatment to our adult congenital cardiology team when it’s time.

Specialized equipment:

Cleveland Clinic Children’s regularly uses the latest tests and methods, like 3D printing to build models of your child’s heart, to treat Ebstein’s Anomaly. This helps us craft highly personalized treatment plans for complex surgeries to repair valves and other damage.

Skilled collaborative providers:

Sometimes, kids with congenital heart conditions like Ebstein’s anomaly need more than just heart care. And Cleveland Clinic Children’s has the specialized providers your child needs. We build their personalized care team around their unique diagnosis and needs. And all providers work together to keep your child at the center of their care. Meet our team.

Virtual visits:

Not all appointments need to be in person. Whether you live just around the corner or in another city, state or country, our virtual visits are perfect for consultations, follow-ups and quick check-ins. Your child will get the same great care from our providers as they do in person — without leaving home.

National recognition:

Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.

Understanding Ebstein’s Anomaly in Children

When you hear your child has Ebstein’s anomaly, you probably have a lot of questions about what it is and what it means. This congenital (born with it) heart condition affects one of the four valves in your child’s heart — the tricuspid valve. This valve makes sure blood flows in the right direction at the right time.

An Ebstein’s anomaly diagnosis means that this valve is either abnormally shaped (malformed) or sits lower than it should in their heart (misplaced). Either of these problems causes blood to leak backward (regurgitation) into their heart’s upper right chamber (right atrium). This can cause an irregular heart beat (arrhythmia), an enlarged right atrium and eventual heart failure if not treated.

It’s not unusual for kids with Ebstein’s anomaly to have other congenital heart conditions. The most common is one of two kinds of holes in the wall between the heart’s upper chambers — atrial septal defect or patent foramen ovale. Ebstein’s anomaly in children and these associated conditions may need to be treated.

Diagnosing Ebstein’s Anomaly in Children at Cleveland Clinic

Before we start treatment, our team will want to spend time with you and your child to learn more about what’s going on in an evaluation appointment.

What to expect at your child’s first visit

Your child’s story is an important part of confirming a diagnosis. So, when you meet with their provider, don’t be surprised if they ask a lot of questions like:

What symptoms have you noticed?
How long has your child had these symptoms?
Have you seen other providers about these symptoms?
What did these providers say?
Have they already been diagnosed with other health conditions?
Does anyone in your family have a heart condition? If so, what?

Your child’s provider will do a physical exam if you’re meeting in person — listening to your child’s heart and checking their overall health. They’ll also order tests to help rule out other conditions and pinpoint a diagnosis.

Testing for Ebstein’s anomaly in children

We can see how your child’s heart works by doing an ultrasound called an echocardiogram (echo). Abnormal heartbeats can show up on an electrocardiogram (EKG). Imaging tests like a chest X-ray or heart MRI can help our team see if your child has an enlarged heart or abnormal valves or chambers. Depending on your child’s age, we may do other noninvasive tests. Their provider will go over other testing recommendations with you.

Meet Our Team for Ebstein’s Anomaly in Children

When it comes to caring for children with congenital heart conditions, nothing is better than having a strong team on their side. You can count on this when you bring your child to Cleveland Clinic Children’s. We believe the most personalized care comes from having providers from different specialties working together, like:

Pediatric cardiologists.
Pediatric cardiothoracic surgeons.
Pediatric cardiac anesthesiologists.
Pediatric electrophysiologists.
Pediatric interventional cardiologists.

We build your child’s care team based on their diagnosis and needs to make sure they have the best possible treatment plan and results.

Providers Who Treat Ebstein's Anomaly in Children

Locations

Our healthcare providers see patients at convenient locations throughout Northeast Ohio.

Treating Pediatric Ebstein’s Anomaly at Cleveland Clinic Children’s

Because Ebstein’s anomaly affects each child in different ways, your child’s care is highly individualized. If they have a mild abnormality with no symptoms, we may do watchful waiting instead of starting treatment. This means they’ll have regular checkups and testing so we can be sure things aren’t progressing. If we find that your child starts having symptoms, they may have:

Medications

Your child’s care team may recommend medications to help manage arrhythmia and signs of heart failure.

Physical activity restrictions

If your child is old enough to run and play, we may have you limit the length and intensity of their physical activity. This can help manage enlarged heart symptoms or an irregular heartbeat.

Surgery

If your child has severe symptoms, they may need tricuspid valve surgery to correct misplacement or malformation. As often as possible, we try to repair the valve with your child’s undamaged tissue. But sometimes, we may need to replace their abnormal valve with a mechanical (human-made) one. We also may be able to use one made of biological tissue from a cow, pig or human heart.

If your child has tricuspid valve surgery, we may also do other repairs at the same time. We may fix the hole between their heart’s upper chambers. Or we may treat their arrhythmia with catheter ablation or other procedures. Your child’s providers will go over what to expect from your child’s surgery plan.

Only rarely will someone with Ebstein’s anomaly need a heart transplant. We do this surgery only if other treatments have failed.

Traveling for Children’s Heart Care at Cleveland Clinic

We know that traveling for any medical treatment can often be stressful and overwhelming. Especially when it comes to your child. If you’re coming to us from another city, state or country, we make things as easy and convenient as possible.

Need a place to stay? We’re on it. Want to grab a bite nearby? Just ask. Not sure how to find your way to us or around our campus? We have the directions you need. No matter what, we’re here for you.

When you come to us from another country, we’re ready to help, too. Our experienced and compassionate Global Patient Services (GPS) team can help you navigate Cleveland Clinic.

We can connect you with the healthcare providers you need and help you make appointments. Need a translator? We have you covered. We’ll even help you coordinate follow-up care with providers back home.

Taking the Next Step

Learning your child was born with a heart condition can be one of the toughest things you may ever hear. That’s why you’ll want to make sure they get the best care from providers you trust. You don’t need to look any further than Cleveland Clinic Children’s.

Our team of pediatric heart specialists and other providers are here to guide you and your child through every step of their treatment and ongoing care. And when they’re ready to leave us behind for adult care, we’ll help them make that transition to Cleveland Clinic cardiology providers. We’re here for them (and you) at all ages and stages.