Hypoplastic Left Heart Syndrome Drives Family To Raise Awareness For Congenital Heart Disease
During Heart Month in February, most people think of adults and heart disease. Too few realize that some 32,000 babies per year are born with congenital heart defects. In fact, it is the #1 birth defect, by far. Some of those defects are so major — such as hypoplastic left heart syndrome (HLHS) — that babies have to undergo open heart surgery as newborns, followed by at least 2 other surgeries as they grow.
Our son, Daniel, was born with HLHS, and we have been struggling with the consequences for 17 years. Our family is passionate about doing everything we can to raise awareness about CHD and to support research that might one day change this — literally — heartbreaking disease.
This year, we went a few steps further to help get the word out. I sent a request to Mayor Parker of Houston and Governor Perry of Texas asking for a Proclamation of CHD Awareness Week. This is something people do in every state, every year to help generate awareness.
And we’re excited to report that our request has been granted by Governor Rick Perry, who proclaimed February 7-14 as Congenital Heart Awareness Week in Texas.
Our family is also participating in the “It’s My Heart Walk”, which raises funds to support CHD research. We sent e-mails to all the major school districts, hospitals and nearby subdivisions requesting that they mention this cause. My daughter took a heart box to her high school and collected donations for the walk. We hosted a party celebrating these donations at our house.
We have spread so much awareness on Facebook with CHD Awareness pictures, stories and links to help others. Our team gets so excited every time we think we have helped someone learn and possibly prevent undetected CHD’s.
Most people don’t know there’s an easy, almost free, non-invasive technique with a little red light taped on their finger or foot for a minute to check the blood-oxygen level. Until the government requires this as one of the 35 newborn screening tests, (many people are working on that,) it is up to you to request it.
We hope that other CHD families will be inspired to follow our lead and raise awareness for congenital heart disease.
Happy Heart Month!