Locations:

You just learned your baby was born with a heart condition. And now all you can think is, “Will they be OK?”

Pulmonary valve stenosis is a common congenital heart condition (one that your child is born with). This valve usually opens and closes to let blood flow to the lungs from the heart. When it has stenosis, it means the valve’s stiffer or narrower than it should be, making it harder for it to open and close. This can strain the heart. It can also interfere with normal blood flow and cause many different problems if it’s severe or untreated.

While you’re trying to wrap your head around this news, it’s important to remember you’re not alone in a sea of medical information. Cleveland Clinic Children’s is home to experienced pediatric cardiology providers. Our team knows what it takes to treat this condition. We’ll walk you through what to expect and treat your child as if they’re our own.

Why Choose Us To Treat Pulmonary Valve Stenosis in Children?

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Caring approach:

When your child has a heart condition, you’ll want to learn everything about what’s going on. Cleveland Clinic Children’s providers keep open lines of communication. We’re here to answer your questions, listen to your concerns and keep you in the loop every step of the way.

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Comprehensive care:

Children with congenital heart conditions often need lifelong follow-up care. Cleveland Clinic Children’s has the care your child needs until young adulthood. And when it’s time, our team will seamlessly help them move to adult care at Cleveland Clinic. We have them covered at every age and stage of life.

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Minimally invasive treatments:

When possible, our pediatric providers try to avoid open heart surgery. Our pediatric interventional cardiology team will evaluate your child’s condition and see if a minimally invasive treatment is an option. This team and our pediatric heart surgeons can even work together during a procedure when needed. Meet our team.

Diagnosing Pulmonary Valve Stenosis in Children

Pulmonary valve stenosis in children happens when their pulmonary valves don’t grow as they should during fetal development. They can be too small, stiff or narrow. Or they might not open or close correctly. This can keep blood from flowing smoothly from your child’s heart to their lungs through their pulmonary arteries.

The most common symptoms for pulmonary stenosis in a baby are fast or labored breathing, sweating while feeding, taking frequent breaks during feeding, poor growth and, possibly, bluish fingers or lips from a lack of oxygen (cyanosis).

Sometimes, however, your child may not have any symptoms at all. Maybe their pediatrician noticed an abnormal whooshing sound in their heart (heart murmur) and referred them to our team. Or maybe they’ve had breathing problems or less common problems like a fast heart rate, fainting or swelling (edema) in their arms, legs and belly.

The more severe this heart valve condition is, the more symptoms your child may have. No matter the symptoms, it’s important to make sure they get care from experts in diagnosing and treating pulmonary valve stenosis in children.

What to expect at your child’s first visit

Your child’s story plays a big role in helping their pediatric provider confirm a diagnosis and plan treatment. At your child’s first appointment, you’ll want to be prepared to answer a lot of questions about what’s been happening. Their provider may ask:

  • What kinds of symptoms does your child have?
  • How long have they had these symptoms?
  • How are these symptoms affecting their life?
  • Have you seen another provider about these symptoms?
  • What tests, if any, has your child had so far?

Your child will then have a physical exam so their provider can check out their overall health and listen to their heart for a heart murmur. They may also order tests to help them learn more about your child’s heart and pinpoint a diagnosis.

Testing for pulmonary valve stenosis

Cardiac imaging helps us look more closely at your child’s heart and pulmonary valve. Our providers may set up tests like:

Your provider may also set up a cardiac (heart) CT scan if your child is diagnosed at an older age and has other significant issues called pulmonary regurgitation (blood leaks back into their heart after being pumped out to their lungs) and right ventricular dilation (the bottom right chamber of your child’s heart becomes abnormally enlarged).

Our team may do cardiac catheterization to learn more about the hemodynamics (how your blood flows through your blood vessels). We run a tiny, hollow tube (catheter) through the vein and artery in your child’s groin to access the chambers, valves and blood vessels in their heart. We then inject a contrast solution through the catheter to highlight the narrowing or blockage on digital X-rays. Your child will be asleep with general anesthesia during the procedure and won’t feel any pain or discomfort.

Meet Our Pulmonary Valve Stenosis Team

Treating congenital heart conditions in children takes teamwork with pediatric providers from different specialties working together to make sure your child gets the most personalized treatment. That means we’ll consider your child’s unique diagnosis as we build their care team with providers like:

Locations

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

Treating Pulmonary Valve Stenosis in Children

Our team builds your child’s treatment plan around their specific needs and diagnosis. If they have mild stenosis, they may not need treatment. Instead, we may recommend watchful waiting. This means we’ll schedule regular checkups and testing so we can keep an eye on their condition. If it starts to progress, we can discuss treatment options.

If your child has symptoms or more severe stenosis, we’ll recommend treatments to open, repair or replace their pulmonary valve.

Minimally invasive treatments

If your child has minimally invasive valvuloplasty, we’ll use a small catheter through their groin to place a deflated balloon in the narrowed valve. Then, we’ll inflate the balloon to widen the valve. This interventional cardiology procedure is an alternative to surgery and doesn’t require large incisions (cuts). Sometimes, as part of this procedure, your provider may also do an angiogram. This test uses imaging to show how your child’s blood flows through their heart.

Transcatheter pulmonary valve replacement (TPVR) is another minimally invasive, interventional treatment, done only in older children and adults, not infants. Like we do in valvuloplasty, we go through their groin using tiny incisions rather than doing traditional surgery with a large cut. Our team uses an X-ray to guide the new valve through a vein in their leg until it’s implanted in the right place.

Heart valve surgery

Sometimes, surgery is the best way to repair or replace pulmonary valves affected by stenosis. We use surgery to fix the valve by using as much natural tissue as possible. We may also use a patch or we may need to replace the valve with one made from biological tissue from a pig or cow (bioprosthetic valves). We do this through open heart surgery.

Traveling for Children’s Heart Care at Cleveland Clinic

When your child needs medical treatment, there’s probably a lot running through your mind. Especially when you’re traveling for that treatment. It can be overwhelming if you’re coming to us from another city, state or country, so you’ll want things to be as convenient as possible. We can help. Need a place to stay? We’re on it. Want to something to eat? We can suggest a few places. Feeling lost in the city or on our campus? We’ll point you in the right direction. No matter what, we’re here for you.

If you’re coming from another country, our experienced Global Patient Services (GPS) team is ready to help you plan and navigate your trip to Cleveland Clinic. Our team connects you with the healthcare provider you need and even makes appointments for you. We also provide language translation services if you need them. And we can coordinate follow-up care for your child when you return home.

Transitioning to Adult Care

While surgery or interventions can fix pulmonary valve stenosis, there’s always a risk it can come back (recur). That’s why your child’s care team will recommend regular tests and checkups with them. When your child grows up, they’ll still need to have these appointments. But they won’t have to worry about finding adult care. When it’s time for them to make the move, our team will help them seamlessly transition to Cleveland Clinic’s cardiology providers.

Taking the Next Step

Pulmonary valve stenosis in children is treatable. As you think about this, you may wonder what kind of treatment your baby will need. Cleveland Clinic Children’s cardiology providers have those answers — and the expert, compassionate care your child deserves. We’re here to help them get back to doing what they do best — being a kid. And give you the chance to breathe easily, knowing your child is in the most capable hands.

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