About 0.8% of all babies born in the United States are born with a congenital heart defect, or CHD. While less than 1% of the population might not seem like a lot of people, 35,000 babies will be born with a heart defect this year [1]. CHDs can be “mild” to “complex”.

Mild heart defects sometimes need no treatment and resolve on their own. Others will require medical treatment. I was born with one of the most common CHDs, a patent ductus arteriosus [PDA]. Before birth, there is no closure between the aorta (which after birth transports oxygen rich blood) and the pulmonary artery (which brings oxygen depleted blood back to the heart from the lungs). The ductus arteriosus usually closes on its own, but sometimes, it remains patent (open), causing heart murmurs, and increased blood pressure in the lungs, and the heart has to work very hard to compensate for the lack of oxygenated blood it can transport [1] Fortunately, this common CHD may resolve itself if the hole is small—my PDA was corrected with medication, as is often appropriate. In other cases, surgery or other procedures may be necessary.

Other common heart complications present at birth often involve the valves of the heart—if they are too narrow, not shaped correctly, or valves are present but do not have a hole for blood to pass through. Sometimes, for instance with narrow valves (stenosis), the condition is mild and does not require immediate treatment. Other cases, such as more severe stenosis, or as with valves that do not allow blood to pass through, contribute to more complex or serious congenital heart defects [1]. Depending on each case, each of these may require treatment, short-term, or long-term monitoring by a cardiologist (heart specialist).

Complex congenital heart defects will require lifelong management, medical treatment, and care. Combinations of the above defects may result in a more complex CHD in terms of outcomes and management. Some severe defects are known as “cyanotic defects” [2]—in reference to the bluish or “cyan” coloring in the skin when the body is oxygen deprived. Tetralogy of fallot is among the more common complex defects [1], comprised of four defects within the heart:

Sometimes, the big arteries in the heart are switched, allowing blood to flow where it is not supposed to within the heart: because of this reversal, most of the blood is pumped back out of the heart without being reoxygenated in the lungs.

While several medications, catheterization procedures, and surgical procedures are available to help treat CHDs, sometimes in cases of complex or severe defects, if all options fail, a heart transplant may be required. This can be needed shortly after birth, or far into adulthood, depending on the type and progression of a person’s CHD.

The memoir Beautiful Affliction by Lene Fogelberg details the story of a young woman diagnosed with a CHD after giving birth to her two children and a worsening of her symptoms as a valve in her heart becomes very narrow. Fogelberg becomes increasingly short of breath, feels faint, and often is on the verge of losing consciousness—her cardiologist proclaims that she is lucky to have survived childbirth not only once, but twice.

Symptoms of a CHD include [2]:

Congenital heart defects are identified through chest x-ray (showing structural changes in the heart, lungs, and bones of the chest), echocardiogram (a 3D picture of the heart, like an ultrasound), electrocardiogram (ECG or EKG, a test that shows how the heart beats and if this rhythm is abnormal), “Cardiac CT” scan (or MRI/Magnetic Resonance Imaging) [2].

You can learn more about Congenital Heart Defects by visiting the Heart and Stroke Foundation of Canada, The Children’s Heart Foundation, and Little Hearts. If you live with a CHD, ask your doctor about the best information to engrave on a medical ID bracelet to keep you safe.