Special Needs Feature: Congenital Heart Defects

Did you know that this week is Congenital Heart Defect (CHD) Awareness Week? According to The Congenital Heart Information Network, CHD Awareness week is an annual effort to help educate the public about congenital heart defects. Participants include individuals, local support groups, national and local organizations and congenital cardiology centers throughout the world.

Congenital Heart Disease (CHD) is considered to be the most common birth defect, affecting roughly 1 in 100 births or 40,000 newborns annually. CHD is also the leading cause of birth-defect related deaths worldwide.* There are 35 defined types of CHD, and in most cases, doctors cannot point to any one genetic or environmental factor that would cause the disease.** The Children’s Hospital of Pennsylvania defines congenital birth defects as follows:

Multifactorial inheritance means that “many factors” (multifactorial) are involved in causing a birth defect. The factors are usually both genetic and environmental, where a combination of genes from both parents, in addition to unknown environmental factors, produce the trait or condition. For more on causes of CHD, visit this site.”

Congenital heart defects may be serious or minor; each case is unique. Although CHD is responsible for nearly 20% of all birth defect-related deaths, a diagnosis of CHD is not necessarily a death sentence. It is, however, an ongoing condition, requiring medical attention throughout the patient’s life. Many heart defects can be corrected or helped with surgery, medicine, or devices, such as artificial valves and pacemakers. Even facing these trials, it is absolutely possible for a child with CHD to lead a healthy, near-normal life.**

If your child is not diagnosed with CHD in utero or at birth, how do you know if he or she may be affected? The American Heart Association gives us some signs and symptoms to look for. Parents should be alert to the following characteristics in infancy:

Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

Some children with CHDs may not have any symptoms until later in childhood. The Congenital Heart Information Network advises parents to look for the following symptoms:

– Gets out of breath during play
– Difficulty “keeping up” with playmates
– Tires easily/sleeps a lot
– Change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
– Frequent colds and respiratory illnesses
– Slow growth and weight gain/poor appetite
– Complains of chest pain and/or heart pounding

All organizations that provide information on CHD recommend that you talk to your pediatrician about a referral to a Pediatric Cardiologist if your child has two or more of these symptoms. A Pediatric Cardiologist can use a chest x-ray, electrocardiogram, echocardiogram, or cardiac catherization to diagnose CHD. Descriptions of these diagnostic tools are below:

– Electrocardiogram: a test that records heart rate patterns
– Echocardiogram: a special form of ultrasound that uses sound waves to take pictures of the heart
– Cardiac Catheterization: a thin, flexible tube inserted into the heart to examine for defects, pumping ability, measure blood pressure within the heart and oxygen in the blood.***

Once a diagnosis is made, there are many concerns and questions, and certainly a lot of emotion involved. The parents I spoke to pointed me to the following information and support websites:

The Congenital Heart Information Network
Resource room for more reading on specific conditions: http://tchin.org/resource_room/index.htm

NC support group
This website was started by 4 moms in the Charlotte area whose children were diagnosed with some type of congenital heart defect. The site has grown quickly and is a wonderful source of information and support. It even offers a contact method to speak to parents of children who have children already diagnosed with CHD.

To read more local, real-life stories about these special families, go to http://www.levinecardiackids.com/ourstories.htm

Little Hearts also has a parent matching program to help parents of newly-diagnosed children speak to other families who have been through similar experiences.

Congenital heart defects are just plain scary, regardless of severity. However, as with our other special-needs topics, the message from both the support systems and the parents of CHD children was unilaterally optimistic: stay positive, ask for help, and love your child to pieces. There is certainly help out there for your child, your family, and your outlook.

Even if you do not know a child that has been affected by CHD, you can still help. There are an estimated 1.8 million families affected by Congenital Heart Defects, yet the funding for research and education is very limited. You may make a donation on any of the resource websites listed above. You can also “like” CHD Awareness Week” on Facebook, or download a banner or web link to your personal website or blog.

Have you been affected by CHD, or do you know someone who has? Share your story with us!

* Source: Children’s Heart Foundation
**Sources: March of Dimes, Little Hearts
***Source: www.tchin.org