It’s a diagnosis that no parent wants to hear: “Your child has congenital heart disease.” But if you or another parent close to you have heard these words, take heart. With medical intervention and the right aftercare, kids with a diagnosis of congenital heart disease (CHD) can grow up to be healthy, happy adults. In fact, there are currently one million adults in the United States living with CHD. But first, it’s important to know the condition exists as early as possible.
What is congenital heart disease?
A congenital heart defect occurs when the heart, or blood vessels near the heart, do not develop normally before birth. There are over 25 different defects and abnormalities that can affect a child’s heart. Each year, approximately 40,000 babies are born with CHD, making it one of the most common birth defects. One-third of these children are critical and have a complex form of CHD that will require surgery or an interventional catheterization in their first year of life. The most immediate symptoms are:
- Difficulty breathing, including breathing fast or hard for prolonged periods of time
- Appearing blue or pale around the face or body
- Poor feeding, including breathing difficulty, tiring, or becoming sweaty during feeds
Half of infants with CHD may also have some neurodevelopmental disabilities, such as feeding difficulties, or delayed milestones, such as motor skills or speech and language development. Longer-term challenges include learning disabilities, autism, mental health issues and decreased executive functioning.
In some children, CHD may not be detected until later in childhood. Signs and symptoms that may point to CHD include:
- Tiring easily during activity or exercise
- Chest pain, particularly with activity or exercise
- Fainting or near-fainting episodes
- Palpitations (fast or irregular heartbeats)
- A heart murmur heard by the pediatrician
- Elevated blood pressure (hypertension)
Diagnosis and treatment of congenital heart disease
In some cases, CHD may be diagnosed during a routine fetal ultrasound performed during pregnancy. In those cases, a pediatric cardiologist can do a specialized ultrasound before the baby is even born, called a fetal echocardiogram. If your child’s pediatrician suspects a CHD after delivery or later in life, one or more of the following diagnostic tests may be ordered for your child at the Miller Children’s Heart Institute:
- Pulse oximetry - A sensor is used to record the oxygen level in the blood.
- Electrocardiogram (ECG) - Sensors attached to a computer record the electrical activity in the heart.
- Echocardiogram - Sound waves (ultrasound) are used to obtain a 2-D or 3-D moving image of the heart.
- Holter monitor - A home cardiac monitor incorporated into a small patch that can record heart rhythm abnormalities.
- Chest x-ray - Perform an image of the heart and lungs.
- Cardiac CT or MRI - High-resolution X-ray or magnetic fields are used to create detailed 2-D and 3-D images of the heart.
- Cardiac catheterization - Specialized catheters are advanced from the vein and artery of the leg to the heart to measure pressures, check oxygen levels, and inject contrast to obtain images. In some patients, devices can be used to correct certain forms of CHD, including closing holes in the heart, opening narrowed blood vessels or valves, and even replacing valves without the need for open heart surgery.
Parents are part of the team
When CHD is the diagnosis, parents play an integral role in their child’s treatment and recovery. The Mighty Hearts Program, part of the Children's Heart Institute, collaborates with the Rehabilitation Center at Miller Children's & Women's Hospital to offer kids with CHD multi-faceted rehabilitation services. A specialized program for infants helps early identification and treatment of developmental delays and feeding difficulties and improve growth and development. Outpatient pediatric rehabilitation improves older children’s ability to engage in activities at home, school and the playground, and is aimed at enhancing their quality of life and scholastic success. Parents learn how to create the optimal healing environment for their child, whatever the age and level of development.
February is American Heart Month, and there has never been a better time to remind parents of how important heart health is to their child’s development. And for those born with a congenital heart defect, the treatment options have never been better to help kids toward a successful recovery.
If you suspect your child may have a congenital heart condition, schedule an appointment with our team at the Children’s Heart Institute at Miller Children’s & Women’s Hospital.
Dr. Saar Danon, M.D. is the Medical Director of Pediatric Cardiology and Congenital Cardiac Catheterization at Miller Children's & Women's Hospital. As an interventional pediatric cardiologist, he specializes in the use of catheters and devices to treat children with congenital heart disease. He is also active in the diagnosis and treatment of infants, children and young adults with all forms of heart disease. Dr. Danon is dual-boarded in pediatric cardiology and adult congenital heart disease and cares for both children and adults born with congenital heart disease. His research focuses on developing new devices and techniques to increase the number of children who can be treated with cardiac catheterization procedures.
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