Congenital Heart Disease (CHD)

What are the signs and symptoms of congenital heart disease?

The signs and symptoms of congenital heart disease can vary according to the defect and its severity.

Signs of fetal heart disease during pregnancy

Expectant mothers carrying a baby with a fetal heart defect do not experience any outward signs of CHD. An obstetrician (OB) or maternal fetal medicine specialist (MFM) may suspect a fetal heart problem during prenatal ultrasound. They would then refer the patient to a fetal cardiologist to make or confirm the diagnosis.

If a CHD is detected in utero, it gives the family time to understand the diagnosis, evaluate for additional fetal abnormalities and make pregnancy decisions based on their personal values. For families who want to continue the pregnancy, diagnosis before birth allows the doctors and family to plan fetal monitoring, design a safe and timely delivery and plan for medical care they might need immediately after birth.

Learn about other fetal heart conditions that can develop during pregnancy.

Signs of congenital heart disease in babies and children

Signs and symptoms of CHDs vary depending on the type and severity of the specific defect. Some heart defects cause little or no symptoms. Others cause serious symptoms right at birth.

Because CHDs affect the heart's ability to pump blood to the rest of the body, congenital heart defects can produce signs including:

• A blue tint to the nails, lips or skin (called cyanosis)
• Fast or troubled breathing
• Tiredness and sleepiness, especially when feeding
• Sweating, especially during feedings
• Failure to gain weight (failure to thrive)
• Weak pulse

How do we diagnose congenital heart disease?

A majority of serious congenital heart diseases can be detected and diagnosed before the baby is born. For those babies with heart problems not detected in the womb, most are diagnosed soon after birth thanks to newborn screening programs. Some minor forms of congenital heart defects are more difficult to detect early in life and may not be diagnosed until later in childhood.

In some cases, these conditions go undiagnosed until a person becomes an adult. Both children with CHD who grow up to become adults and the adults who are not diagnosed until much later in life have what is known as adult congenital heart disease, which requires specialized, lifelong care.

Diagnosing congenital heart disease before birth

Using a special type of ultrasound called a fetal echocardiogram (or ECHO), our fetal cardiology specialists can diagnose a majority of CHDs before birth – specifically, structural cardiac defects and cardiac arrhythmias.

During fetal echocardiography, sound waves create a picture of the baby's developing heart. The fetal cardiologist then uses these ultrasound pictures to determine if the anatomy is abnormal and diagnose any fetal heart problems. An obstetrician may refer an expecting mother for a fetal echo if:

• There's a family history of CHD
• The fetus has a chromosomal (genetic) condition like Down syndrome
• The mom has chronic medical condition associated with congenital heart disease, such as diabetes, lupus or Sjogren's syndrome
• The screening ultrasound shows signs of heart disease or abnormal heart rhythm

Diagnosing congenital heart disease in babies and children

Even without a fetal diagnosis, almost all serious or critical congenital heart diseases are caught before the baby is sent home from the hospital thanks to screening programs for CHD, such as pulse oximetry (pulse ox). A pulse ox is a painless test that uses a sensor to check the amount of oxygen in the baby's blood.

If a newborn or child exhibits signs and symptoms of a heart defect and a CHD is suspected, your child will be referred to our Heart Institute to undergo evaluation by our nationally-ranked pediatric cardiology team.

Cardiac evaluations may include the following diagnostic tests:

• Pediatric electrocardiogram
• Pediatric echocardiogram (ECHO)
• Pediatric cardiac MRI
• Cardiac catheterization

Your cardiologist will determine if any of these tests are needed.

How do we treat congenital heart disease?

Not all congenital heart diseases require treatment, but for those that do, treatment can vary from minor to invasive, like open heart surgery. Your cardiology team will guide your child's care to ensure they receive the best monitoring and treatment for their particular congenital heart defect. Treatment for congenital heart disease can include:

• Minimally-invasive catheter procedures
• Pediatric heart surgery
• Heart transplant

Why choose Children's Colorado to treat your child's heart condition

At Children's Colorado, the multidisciplinary team at our nationally-ranked Heart Institute cares for patients with a wide range of congenital heart defects, from the most common to the very rare.

Our team's advanced training and access to leading-edge pediatric research, imaging and technology mean that we're equipped to correct many heart defects without open heart surgery. We treat every patient and every diagnosis individually, working as a team to determine the best treatment for your child's heart defect.

Watch how we came together to determine the best treatments for Theo, Sam and Colt in the video below.

Our Cardiology Program has some of the best patient outcomes of any pediatric hospital in the nation thanks to our dedicated team of cardiology experts.

Labor and delivery for pregnancies with cardiac complications

For certain severe CHDs, babies may need cardiac intervention immediately after delivery. Sometimes, babies born with a critical heart disease that wasn't diagnosed before birth may be separated from their mothers as they're transferred to a different department or facility with cardiac capabilities upon birth.

But here at the Colorado Fetal Care Center at Children's Colorado, we keep moms and babies close together. With state-of-the-art delivery suites, a Cardiac Intensive Care Unit (CICU) and dedicated Maternal Fetal Care Unit (MFCU), we're able to provide the full range of fetal, obstetric and pediatric expertise you and your baby need – before, during and after delivery.

In our Fetal Cardiology Program, your baby will be in the capable hands of the pediatric cardiology specialists they need. And while you recover from your delivery in the MFCU, you'll be just a floor away from where your baby is recovering from treatment in the CICU.

And if your baby is transferred here from another hospital after delivery, you can be transported as well to recover just steps away from your child.

A lifetime of care for congenital heart disease

From pregnancy through adulthood, Children's Colorado's Heart Institute has the expertise to care for individuals diagnosed with congenital heart defects. No matter when the patient is diagnosed, be it in infancy, childhood or even adulthood, we are equipped to provide expert and compassionate lifelong care for simple to complex heart defects.

See how we provide care long past adolescence in our Adult Congenital Heart Disease Program.

Helpful resources for families of patients with congenital heart disease

If you'd like to learn more about congenital heart disease, visit:

• Heart Institute
• Colorado Fetal Care Center
• American Pregnancy Association
• Pediatric Congenital Heart Association
• Adult Congenital Heart Association
• 2HEARTS
• March of Dimes
• Centers for Disease Control and Prevention (CDC)
• American Heart Association
• National Heart, Lung, and Blood Institute at the National Institutes of Health