Congenital Heart Disease in Children

Congenital heart disease means your child’s heart didn’t develop like it should have before birth. There are problems with its structure. There are two main types of congenital heart disease — acyanotic and cyanotic.

Acyanotic heart disease

If your child has acyanotic heart disease, it means that blood can still get to their lungs to pick up the right amount of oxygen, but it’s not pumped through their body normally. Examples are:

• A hole in their heart wall, like an atrial or ventricular septal defect or patent ductus arteriosus
• An abnormal heart valve that works normally, like a bicuspid aortic valve
• Blood vessels that are too narrow. This can happen with an aortic coarctation

Cyanotic heart disease

Cyanotic heart disease doesn’t let enough blood to get to your child’s lungs to pick up and deliver the amount of oxygen your child’s body needs. Examples include:

• Interrupted aortic arch or truncus arteriosus
• Hypoplastic left heart syndrome
• Pulmonary or tricuspid atresia

Other types of acyanotic and cyanotic heart disease include:

• Endocardial cushion defect
• Partial anomalous pulmonary vein return (PAPVR)
• Scimitar syndrome
• Shone’s complex
• Tetralogy of Fallot

Complications of congenital heart disease in children

Undiagnosed or untreated congenital heart disease in children can cause complications, like:

• Heart infections (endocarditis)
• Abnormal heart rhythms (arrhythmias)
• Stroke
• Heart failure

Eisenmenger syndrome, which is caused by high blood pressure in the lungs (pulmonary hypertension) is also a possible complication, but it’s rare these days since most heart disease is diagnosed early enough to avoid it.

Diagnosing Congenital Heart Disease in Children

Sometimes, we can diagnose congenital heart disease in children before birth during a routine ultrasound during pregnancy. If we do suspect heart disease, your obstetrician will refer you for a fetal echocardiogram, which is a specialized ultrasound focused on the fetus’ heart.

Other times, we’ll detect congenital heart disease in children shortly after birth. And still other times, it may not be noticeable until later in childhood or adolescence.

Congenital heart disease’s signs and symptoms can vary. Your child may feel tired or sleepy most of the time. Or they may have trouble breathing. They might even have bluish skin, lips or fingernails (cyanosis). Their pediatrician might hear a heart murmur or abnormal heartbeat through a stethoscope. It’s important to get care quickly if you suspect your child has a heart problem, or at least some of these telltale symptoms.

What to expect at your child’s first visit

You’ll probably have many questions about congenital heart disease in children and what this diagnosis can mean for your child. Our team of expert pediatric providers will take the time to listen to your concerns and help you understand what’s going on.

Your child’s provider will ask questions about what kind of symptoms your child has. They’ll want to know how long they’ve had them and how these symptoms have affected your child’s life. All of this helps them confirm a diagnosis. So does a physical exam and testing.

Testing for congenital heart disease in children

There are different tests to check your child’s heart. Your child’s provider may choose to do only a few of these. Or they may do all of them, like:

• Chest X-ray
• Electrocardiogram
• Echocardiogram
• MRI for heart disease
• Heart catheterization

If your child is younger, the idea of having tests might seem a little scary to them. Don’t worry. Our experienced child life specialists are here to help them feel more comfortable with all the steps of diagnosis and treatment.

Meet Our Congenital Heart Disease in Children Team

Treating congenital heart disease takes a team of experts all working together to confirm a diagnosis, plan highly personalized treatment and give the best follow-up care. That’s why your child may see providers from several different specialties, all selected to meet their unique needs. Their team could include:

• Pediatric cardiologists
• Pediatric interventional cardiologists
• Pediatric cardiothoracic surgeons
• Pediatric radiologists
• Pediatric nurse practitioners
• Pediatric dietitians
• Child life specialists

Treating congenital heart disease in children depends on the kind of condition your child has and how severe it is. Some conditions go away on their own over time. For others, we may recommend only regular checkups and testing. And other kinds may need treatment — some right away and some after a little time. Treatment could include:

• Using catheterization to plug a hole in their heart wall
• Taking medications to help their heart work better or to manage high blood pressure
• Having heart surgery to repair problems with valves or blood vessels or to redirect blood flow
• Getting oxygen therapy to improve oxygen flow to their lungs and the rest of their body
• Taking one of the hormone-like prostaglandins (prostaglandin E1) to relax their heart muscles and improve blood circulation
• Getting a heart transplant if other treatments don’t work or heart damage is too severe

Your child’s care team will review all options they believe will work best for your child. And they’ll keep a close eye on your child’s progress throughout treatment. They’ll also keep you updated and in the loop the entire time.

Living With Congenital Heart Disease in Children

While some congenital heart conditions go away on their own or can be repaired, some are ongoing and can cause other health problems later in life. That’s why your child will have regular appointments with their care team after treatment. This lets our team keep a close eye on their health and start any needed treatments as soon as possible.

When your child is in their teens, we’ll begin helping them move to adult heart care providers at Cleveland Clinic. And we do it without any gaps in their treatment plan and follow-up care. You and your child can count on us for the lifelong care they need.

Taking the Next Step

Hearing your child was born with heart problems isn’t the news you want to hear. But many types of congenital heart disease in children are treatable. Especially when you work with pediatric healthcare providers who are experienced in treating these conditions. When your child comes to Cleveland Clinic Children’s, they’ll get highly personalized care from a team dedicated to helping them thrive. And your family will get the support they need to help your child navigate every step of their condition along the way.