Cleveland Clinic Children's nurse checking breath sounds of a newborn baby.

Long QT Syndrome in Children

You had no clue something was wrong with your child’s heart. Until they suddenly lost consciousness.

This could be the first sign of long QT syndrome (LQTS) — a rare condition that happens when your child’s heart’s electrical system takes too long to “recharge” between heartbeats. And that delay can cause serious, sometimes life-threatening, arrhythmias (irregular heart rhythms).

If your child has LQTS, it helps to know that they have an expert heart team on their side. Cleveland Clinic Children’s pediatric cardiology providers are recognized for their skill, outstanding results and compassionate care. We’re here to help your child’s heart start beating the way it should again.

Why Choose Us for LQTS in Children Care?

Patient-centered care:

Heart conditions can affect every aspect of your child’s life. So, we listen to your child’s story and recommend the evidence-based treatments that’ll keep them safe, while focusing on what works best for them.

Comprehensive treatment:

Our pediatric healthcare providers are highly trained and experienced in LQTS in children care. From the latest cardiac devices, like pacemakers, implantable cardioverter defibrillators (ICDs) and monitoring devices, to cardiovascular genetic counseling and testing, we give your child the sophisticated care they need. Meet our team.

Trusted experts:

Our pediatric heart providers are specialists in diagnosing and treating heart rhythm and electrical signaling problems in children. We have the technology, tools and experience to offer highly personalized care. People bring their children here from all 50 states and dozens of countries for expert pediatric cardiac and vascular care with excellent results.

Innovation and research:

Cleveland Clinic Children’s cardiac providers constantly research new treatments and therapies to provide top care with the best outcomes. Our clinical trials help us create new treatments by testing the latest drugs, surgery tools and techniques and other therapies before they’re widely available.

Virtual visits:

Virtual visits let you and your child meet one-on-one with their pediatric providers from home, using a smartphone, tablet or computer. Some restrictions may apply to new patient virtual visits. We also encourage in-person annual visits to do testing.

National recognition:

U.S. News & World Report consistently ranks Cleveland Clinic Children’s a top hospital in the nation. Newsweek has also named Cleveland Clinic a top hospital in the world.

Diagnosing LQTS in Children

Maybe your child was born with long QT syndrome (congenital) or perhaps a medication caused it (acquired). All forms of LQTS are considered a sudden arrhythmic death syndrome.

It’s also important to understand that LQTS affects people differently. You might not have known your child had it until they or someone in your family experienced a sudden, life-threatening event, or until their pediatric provider discovered it through routine testing.

What to expect at your first visit

At your child’s first appointment, their pediatric provider will ask:

Have they had any symptoms?
When did the symptoms start?
What medications do they take?
Have you been diagnosed with any other health conditions?
Has anyone in your family passed away suddenly or unexpectedly?
Does anyone in your family have LQTS or another heart condition?

Then they’ll do a physical exam, which includes listening to your child’s heart and measuring their pulse. They may also order other tests, like:

Electrocardiogram (ECG or EKG): This test measures how long it takes for your child's heart to recharge after a heartbeat. This timeframe is called the QT interval.
Exercise stress test: For this test, your child will walk on a treadmill or pedal a stationary bike while hooked up to an EKG machine. It measures how well their heart responds to physical activity.
Echocardiogram (Echo): This ultrasound of your child's heart measures how well their heart’s pumping.
Ambulatory monitor: This device records your child's heart’s electrical activity over longer periods of time. You can take it home with you, and your child can wear it for days, weeks, even years.
Genetic (DNA) testing: This test can find changes in the genes, chromosomes or proteins in your child's body to tell if you have a genetic (inherited) condition.

These tests can help rule out other conditions and confirm a LQTS diagnosis. They also help us learn if your child’s LQTS is genetic or acquired. All of this information guides your child’s treatment plan.

Meet Our LQTS Team

We work as a team at Cleveland Clinic Children's to give you the most personalized and comprehensive care. Your team could include:

Pediatric cardiologists.
Pediatric electrophysiologists.
Pediatric cardiac surgeons.
Pediatric nurse practitioners.
Pediatric nurses.
Pediatric genetic counselors.
Pediatric psychologists.
Pediatric cardiac device specialists.

These pediatric providers work together to craft the best treatment plan for your child. And they meet regularly to go over their progress and adjust treatment as needed. You’re also an important member of our team. We’ll include you in every decision about your child’s care.

Providers Who Treat LQTS in Children

Locations

At Cleveland Clinic Children's, we're here when you need us most. Find a location near you.

Treating Long QT Syndrome in Children

Cleveland Clinic Children’s treats children of all ages with congenital or acquired LQTS. We build a treatment plan using the latest evidence-based practices. Your child’s plan may include:

Lifestyle changes

LQTS can affect different parts of your child’s everyday life. You’ll need to check with your child’s pediatric provider before they do certain things. We recommend keeping your child hydrated and having them avoid certain “triggers.” Your child’s provider will go over specific lifestyle changes with you at their appointment. Our goal is to keep your child doing the things they love, safely, with LQTS.

Medications

Beta-blockers can keep your child’s heart from beating too fast if they’re physically or emotionally stressed. Certain medications can prolong the QT interval. If possible, we may recommend having your child avoid these medications. If they can’t be stopped, we’ll keep a close eye on your child while they continue taking them. We’ll explain all of this during your child’s appointment.

Cardiac devices

Your child's pediatric provider may recommend a cardiac device to help regulate their heart rhythm. We implant a full range of pacemakers, implantable cardioverter defibrillators (ICDs) and loop recorders and do more than 50,000 device checks a year in person and remotely. Your child's care team will go over cardiac device options with you.

Surgery

We only rarely treat LQTS with surgery. In most cases, we do it when the condition hasn’t responded to other treatments. Left cardiac sympathetic denervation (LCSD) surgery, or sympathectomy, detaches the nerves that cause dangerous heart rhythms and helps your child’s heart keep a steady pace.

Taking the Next Step

Facing a chronic (lifelong) heart condition like long QT syndrome can affect every part of your child’s life. They’ll need to commit to regular care and management, so it’s important to have the right team by their side. Cleveland Clinic Children’s has providers dedicated to treating heart conditions in children like LQTS. We’re here to support your child, and you, through this journey and find ways to reduce their symptoms and risk of complications. We want you and your child to feel confident about moving forward in everyday life.