Ebstein Anomaly

What are Ebstein anomaly symptoms?

While pregnant, an obstetrician or maternal fetal medicine specialist can identify the anomaly during a fetal echocardiogram. After birth, your child may experience fatigue (being tired all the time). If this happens, your child’s doctor may suggest they see a heart expert, who will look for an enlarged heart on an X-ray, or a heart murmur (sounds created by rapid blood flow) on an electrocardiogram (EKG).

What tests do we use to diagnose Ebstein anomaly?

A fetal echocardiogram is the best way to detect Ebstein anomaly before birth. In severe cases, we can see this condition as early as 12 to 13 weeks gestation. Testing for Ebstein anomaly in infants and children depends on the severity of the condition and the age of the child. An echocardiogram (ECHO), EKG, stress testing and magnetic resonance imaging (MRI) are used at distinct stages of the patients life and help us know the severity of Ebstein anomaly and determine the best treatment option.

What can I expect from an Ebstein anomaly test?

We test during pregnancy with a fetal echocardiogram. You’ll lie down for the test and it’s not typically painful and is very safe. It usually takes 30 to 45 minutes. The more severe the condition, the more echocardiograms you’ll have. In more severe cases we may need to see you weekly and in mild cases we might just see you twice during pregnancy.

How is Ebstein anomaly treated?

Ebstein anomaly treatment depends on how your child’s tricuspid valve is working and your child’s heart rhythm. In all cases, we suggest long-term follow-up with our Heart Institute. In mild cases, your child usually won’t need treatment. In moderate cases, we typically use medications to treat rhythm problems and help the tricuspid valve work correctly.

In severe cases, if medication doesn’t help and fixing the tricuspid valve is not possible (which is more common for newborns), we offer a procedure called the Starnes procedure. In the Starnes procedure, our surgeons create a different path for blood to go to the lungs so the blood flow avoids the tricuspid valve and right ventricle. We only use this in more severe cases and your child’s heart care team would explain this procedure and long-term effects in detail.

Why choose us for treatment of Ebstein anomaly?

We provide family-centered, expert cardiac care and understand all facets of living with Ebstein anomaly. Our multidisciplinary team can help you understand how this condition might affect your child from birth through adulthood and provide care every step along the way.

Combining the expertise of our Colorado Fetal Care Center and Heart Institute, we offer state-of-the-art care for expecting families to give your baby the best start to life possible. As your child grows, our Congenital Heart Disease Program can help them thrive into their teen and adult years.

As one of the top children’s heart programs in the country with some of the best success rates for treating heart conditions, there’s no better place for your child’s heart care in the Rocky Mountain region.

The American Heart Association has spent nearly 100 years fighting heart diseases like Ebstein anomaly and helping families and communities thrive through funding research and promoting awareness.

How will my child do over time with Ebstein anomaly?

Enormous strides in medicine and technology have improved long-term outcomes for patients with Ebstein anomaly.

Our cardiology team will provide care from before birth into adult age and strive for a seamless transition with uninterrupted care as your child becomes an adult.

Children with more severe forms of Ebstein anomaly, especially those who have single ventricle repair may have a longer recovery, will need more surgeries and will need lifelong medications. Patients with milder forms may not need medical care until later in life. We want our patients to live full lives and support keeping them as active and medication-free as possible, while keeping them healthy and safe.

In milder forms of Ebstein anomaly, heart problems may start later in life. These issues include rapid heartbeats, muscle dysfunction and a leaky tricuspid valve. Our multidisciplinary pediatric and adult congenital heart care teams are experts in providing medical care to help improve these conditions.