About 40,000 babies are born with a Congenital Heart Defect each YEAR in the UNITED STATES ALONE, making CHD the number one birth defect.
What is CHD: A Congenital (meaning present at birth) Heart Defect means that a child is born with an abnormally structured heart - these hearts can be incomplete, missing parts, put together the wrong way, or have holes, narrow vessels or leaky valves.
According to the Children's Heart Foundation there are more than 40 different types of congenital heart defects and little is known about the cause of most of them. There is no known prevention or cure for any CHD.
Some CHDs can be found while you are pregnant through an ultrasound but many of them are not discovered until after the baby is born.
There are a few signs/symptoms that parents might notice in their infant that could be related to CHD. The Congenital Heart Information Network lists the following symptoms for infants
-tires easily during feeding
-sweating around the head, especially during feeding
-fast breathing when at rest or sleeping
-pale or bluish skin color
-poor weight gain
-sleeps a lot - not playful or curious for any length of time
-puffy face, hands and/or feet
-often irritable, difficult to console
Stella's heart defect was not something that we knew about before she was born, in fact I knew very little about CHD. Stella's condition was discovered while we were still in the hospital because she started to turn blue.
At first the nurses thought that she had aspirated but to be on the safe side an echocardiogram was done. This was how her heart defect, Total Anomalous Pulmonary Venous Return (TAPVR) was discovered. TAPVR is a rare heart defect where the pulmonary veins don't connect to the correct place and it requires surgery to "rewire" the pulmonary veins so that blood is able to flow correctly.
Congenital Heart Defects were once thought to be hopeless and not much was known about any kind of treatment (most patients would die due to "heart failure"). Although there is not a cure or a way to prevent CHD from happening, there is a way to treat CHD through surgery and/or heart catheterization. Stella has had two open-heart surgeries and her heart is currently really stable. It is a blessing that Stella was born during a time when these medical advances were available, but I believe that there is still a lot more that can be done to help treat CHD so that it is no longer the number 1 cause of birth defect related deaths.
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