Heart Tumors (Rhabdomyoma)

A cardiac tumor is an abnormal growth in the heart. Heart tumors are rare in children, affecting about 1 percent of babies.

About 90 percent of pediatric heart tumors are benign and don’t spread to other organs. Often, we may not need to do surgery or other interventions.

However, even a benign tumor’s size and location can cause problems. For example, a tumor can affect blood flow inside the heart or cause an abnormal heart rhythm. We treat these kinds of tumors immediately. In fact, we see the full range of heart tumors at Lurie Children’s, including rhabdomyoma — the most common pediatric heart tumor.

What is Rhabdomyoma?

More than 60 percent of heart tumors in kids are rhabdomyomas.

These types of tumors are:

  • Usually benign: Rhabdomyomas are usually non-cancerous.
  • Often diagnosed early: We can diagnose rhabdomyomas in-utero, and they are more common in babies than older children.
  • Linked closely to tuberous sclerosis: More than half of kids who have tuberous sclerosis also have rhabdomyomas. Tuberous sclerosis is a genetic disorder that causes tumors to form in many different organs.
  • Likely to change in size, including shrinking: The majority of rhabdomyomas get smaller or disappear on their own. We only treat the ones that cause problems with the function of the heart.

What are Other Common Pediatric Heart Tumors?

The other heart tumors we tend to see most often in kids include:

  • Fibromas: We usually diagnose this type of tumor shortly after birth. Because it’s linked to arrhythmia, or an abnormal heart rhythm, we nearly always perform surgery. Arrhythmia is actually the most common symptom for heart tumors.
  • Teratomas: This type of tumor can also cause problems for children. It rarely gets smaller on its own, and usually requires surgery.

Malignant (cancerous) heart tumors, such as rhabdomyosarcoma and fibrosarcoma, are extremely rare. We work together with Lurie Children’s Sarcoma team to treat these conditions.

How We Diagnose Heart Tumors

We typically diagnose heart tumors with an echocardiogram. This is an ultrasound that lets us see the heart’s structure and how blood flows inside the heart. We have expert pediatric cardiologists to interpret this test. We can also do fetal echocardiograms, to diagnose a tumor before a baby is born.

To be certain of the type of tumor and its size, we usually need more advanced imaging tests. This includes tests that let us see the heart up close, including cardiac MRI or cardiac CT scan. Here at Lurie Children’s, we have a long history of performing these tests safely, even on the smallest children.

Many tumors don’t have any symptoms (especially in older children). We often pick them up incidentally when doing an imaging test for another suspected issue.

After we have a definitive diagnosis, we’ll create a treatment plan that’s unique to your child.

Why Choose Heart Care at Lurie Children’s?

Heart tumors are rare. But if your child is diagnosed with this condition, you want to be in the best possible hands. The Heart Center at Lurie Children’s is known for:

  • Complete heart care: As a top-ranked center by U.S.News & World Report, we treat all children’s heart conditions, including the most complex tumors that require surgery.
  • High volume center: Our pediatric heart surgeons perform 450+ heart surgeries every year and our cardiologists treat more than 17,000 children each year.
  • Leading radiology team: Imaging is a complex science. In expert hands, it can help avoid more invasive procedures. Our team of radiologists and cardiologists are the best at what they do.
  • Clinics where specialties come together: Our Epilepsy Tuberous Sclerosis Clinic works closely with cardiology, since kids with rhabdomyoma tumors are likely to have tuberous sclerosis.
  • Offering second opinions: Parents trust Lurie Children’s to make a definitive diagnosis. Request a second opinion.

What are the Long-Term Effects of Heart Tumors?

Because no two heart tumors are exactly the same, there isn’t one prognosis. We’re able to successfully treat the vast majority of heart tumors we see. Sometimes a tumor grows back after it shrinks, so we keep a close watch on children, even if they don’t have surgery.

For children who do have surgery, we’ll help them recover and grow stronger. We provide family-centered care in the Regenstein Cardiac Care Unit.

Children diagnosed with heart tumors will need to see a cardiologist through their lives.

We are also part of a multisite data collection for information on cardiac tumors. This helps us understand more what causes tumors and how to treat them.

Heart Center Family Resource Guide

To help prepare families for their care with Lurie Children's Heart Center, we have compiled a list of resources about treatment and recovery. Learn how to get ready for an inpatient stay or outpatient visit, and read about our support services for patients and families.

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