Earlier this month, I helped celebrate Congenital Heart Defect Awareness Week as sponsored by the Congenital Heart Information Network and several leading health organizations. Congenital heart defects are the number one birth defect in the United States, and the leading cause of birth defect related deaths in children under one year. Locally, Mended Little Hearts of Puget Sound is a support group for families who have children with heart defects, is committed to creating awareness of this issue so that families who have children with these defects can have hope for a better future.
I am a mother of a child with a congenital heart defect, which is the No. 1 birth defect in babies every year even more so than all children’s cancers combined. My son Arley is 10 and he has had a huge battle to stay alive. He is a student at Beacon Elementary and loves zombies. He has missed many days of school and important events because of his heart defect. But what makes Arley so special and a hero is all the fight he has in him to stay alive. Just last week he was in the hospital doing a ‘simple’ procedure for most kids but kids with heart defect things just are unpredictable. Seeing the doctors and nurses rush around and giving him life saving meds and fluids is very scary and hard as a parent. I would never wish Arley didn’t have a CHD because he is amazing in every way, but I would wish he didn’t have to endure pain and him to be able to play the sports he so desires.
Since my son’s diagnosis I have heard many more families in the Grays Harbor area born with a congenital heart defect. There can be no adequate description of the emotional, physical and financial toll this can take on a family. Fortunately, there is help and promising research, but much more needs to be done.
Awareness about congenital heart defects is vital to making a better life for children and adults with these defects. Through early detection and diagnosis, better treatment options, and research to determine the cause of these defects, these children will have a far better chance at living longer and leading healthier lives.
As CHD has changed my life and since I have become one of the coordinators to help other families who has a child born with a congenital heart defect.
Mended Little Hearts may be reached locally at (360) 589-8926 or nationally at 1-888-HEART99 (1-888-432-7899) or by visiting the Web site at www.mendedlittlehearts.org.