In honor of Congenital Heart Defect Awareness Week, last night I, and several other ladies, had the privilege of sharing our experiences with Congenital Heart Defects with a group of women from our area. Our stories ranged widely, but they all illustrated just how many families deal with this, even in just our area.
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. In spite of the fact that CHD affects approximately 1.8 millions families in the U.S., still, only a relatively small amount of funding is currently available for parent/patient educational services, research, and support. Even though we have a long way to go, I have been very encouraged at some of the progress made lately, such as the many states that are now including Pulse Oximetry as part of the routine newborn screening in hospitals. Many heart defects are caught during ultrasounds, but for those that aren’t, diagnosing them before they leave the hospital can be a matter of life and death. Pulse Oximetry, which measures the level of oxygen in the blood by shining an infrared light through the finger, is such an inexpensive and non-invasive way to catch signs of heart defects before a child leaves the hospital.
Jade is one of the children that went home undiagnosed. She wasn’t diagnosed till she was a month old. Thankfully, in her case, her defects were not as severe as some children’s, but some babies aren’t as fortunate.
This blog is chock full of posts that go through Jade’s story in great detail, as it unfolded, but for those that are short on time, here’s her story in a nutshell: