Atrial Septal Defect in Children

When your child is born with a congenital heart condition, it means part of their heart didn’t form as it should have. Some holes in their atrial septum — the wall that separates their heart’s upper chambers (atria) — are normal, particularly for newborns. This is called a patent foramen ovale or PFO. If your child has an atrial septal defect, it means there’s a different type of hole in their atrial septum. This can cause some blood to flow (leak) the wrong way inside their heart.

Sometimes, kids have small openings with only minor leakage that usually close on their own and don’t cause problems. Other times when the hole is large enough, it can cause heart and lung problems later in childhood. Typically, the bigger the ASD, the higher the chance of problems and the higher the chance it’ll need treatment.

There are four main types of ASDs, depending on where they’re located in the atrial septum:

• Secundum ASD: In the middle of the wall and the most common type.
• Primum ASD: In the lower part of the atrial septum.
• Sinus venosus ASDs: In the upper or lower back part of the wall.
• Unroofed coronary sinus: A missing or incomplete wall within the left atrium and the rarest type.

Sometimes, we may diagnose certain types of atrial septal defects before birth with a test called a fetal echocardiogram (echo). Other times, your child might have symptoms after birth — like getting sleepy while feeding, not gaining weight and having breathing problems. Most children with an ASD have no symptoms until adulthood.

What to expect at your child’s first visit

It’s natural to feel a little nervous when you come to your child’s first appointment. But don’t worry. We’ll start things out slowly by getting to know you and your child. Their provider will ask questions, like:

• Have they had any symptoms, and if so, for how long?
• Has their pediatrician noticed signs of a heart condition?
• How is this affecting your child’s life?

Then your child’s provider will do a physical exam. They’ll listen to their heart with a stethoscope to see if they notice a murmur, which means that blood isn’t flowing smoothly through your child’s heart. They may only hear a murmur when your child is in certain positions, or sometimes not at all. If they suspect an ASD, they’ll order other tests.

Testing for atrial septal defect

Your child’s provider might order one or more of these cardiac imaging tests to confirm an ASD diagnosis and rule out other conditions:

• Electrocardiography (ECG/EKG)
• Chest X-ray
• Heart CT scan (computed tomography scan)
• Heart MRI (magnetic resonance imaging)

Meet Our Atrial Septal Defect in Children Team

When you bring your child to Cleveland Clinic Children’s, they’ll benefit from our team-based approach to care. Kids with congenital heart conditions like ASDs often need treatment for other health conditions, too. This means they’ll need to work with a care team of different providers, including:

• Pediatricians
• Pediatric cardiologists
• Pediatric interventional cardiologists
• Pediatric pulmonologists
• Pediatric cardiothoracic surgeons
• Pediatric radiologists
• Pediatric ultrasound technicians
• Pediatric care coordinators

Once we get their test results and confirm a diagnosis, we’ll work with your family to build a highly personalized care plan for your child.

Many ASDs (particularly the small ones) close on their own within the first couple years of life. And your child’s tests could show they may not need treatment. Instead, we’ll keep a close eye on your child’s heart to see if the hole gets smaller or closes.

If your child has a larger ASD or the hole hasn’t closed by the time they start school, we usually recommend repairing the hole with an ASD closure option.

Repairing atrial septal defects in children without surgery

We may recommend a minimally invasive percutaneous (endovascular) treatment if the hole is the correct size and shape.

During a cardiac catheterization, we use catheters (thin, flexible tubes) and certain types of imaging, including a transesophageal echocardiogram (TEE) or intracardiac echocardiogram (ICE), to check where and how big the ASD is.

Then we’ll use a cardiac closure tool (septal occluder device) attached to the catheter to seal the hole. As your child grows, the tissue will grow over the device to create a permanent fix. This treatment works best for most secundum ASDs and can work for certain sinus venosus ASDs.

Heart surgery

In some cases, your child may need minimally invasive (uses tiny incisions) or open-heart surgery to repair their atrial septal defect. Surgery is one of the best ways to repair primum ASDs and most sinus venous ASDs. It also works for coronary sinus defects. If your child has other heart conditions in addition to an atrial septal defect or a larger ASD, we may recommend open-heart surgery.

During surgery, we often close the hole by stitching it with a tissue patch of the membrane around your child’s heart (pericardium) or synthetic material. Some ASDs can be closed with just stitches and no patch.

Recovery after atrial septal defect treatments

If your child has cardiac catheterization and a percutaneous treatment, they’ll need to stay in the hospital at least overnight. Once they leave, they should rest and avoid strenuous activities for a week or two.

We’ll give your child a medication (anticoagulant) to prevent blood clots that they’ll take for about six months after treatment. We also recommend that your child takes antibiotics during certain dental and medical treatments within six months of cardiac catheterization to prevent infection inside their heart (infective endocarditis) or on the new device.

If your child has minimally invasive or open-heart surgery, they’ll need to spend one or two days in the intensive care unit (ICU). They’ll get medications and fluids through an IV (in a vein in their arm) and stay in the hospital for a few more days as they recover.

We’ll give your child a medication to remove extra fluid caused by inflammation, which they’ll take for several weeks after surgery. Full recovery can take about two to four weeks for minimally invasive surgery and up to six to eight weeks for open-heart surgery. We’ll help you learn how to best care for your child after they go home and talk about when they’re able to start activities again.

Follow-Up Care

Our pediatric cardiologists will see your child regularly after ASD closure. Your child will have another echocardiogram to make sure their ASD has completely closed. We’ll continue to keep an eye on your child’s health with regular follow-up appointments for the first couple of weeks and months so we can find and take care of any complications right away. Once they’re well-healed from the procedure, follow-up will likely be on a yearly basis.

As your child becomes an adolescent, we’ll help them move easily from pediatric care into adult care with expert, caring Cleveland Clinic providers.

Taking the Next Step

Finding out your child has a heart condition can be alarming. But getting care right away for an atrial septal defect gives your child the best chance to enjoy an active life. Our pediatric healthcare providers find the best treatment plan for your child — guiding them toward the best results and supporting your family every step of the way. Most kids we treat for ASD recover well and can continue their normal day-to-day activities from childhood to adulthood.