Advocacy........

Today begins Congenital Heart Defect Awareness week. Each year I tell Madelynn’s story or some part of it to help spread awareness. This year I decided to do something a little different. Today I want to talk about being the parent of a child with a Congenital Heart Defect (CHD). This year will be 5 years since Madelynn was diagnosed.

Being on the other side of diagnosis, surgery and recovery, hind sight is always 100%. What I would share with a parent with a recent diagnosis is education, education, education. Find out everything you can about your child’s CHD. They tell you to stay away from the Internet it will only scare you. What is scarier than finding out your child’s heart is broken?? Find support groups of families who have travelled your road. Read everything you can get your hands on.

 It sounds like an overwhelming task. However, as you learn about the CHD and how your child is responding to it, you can filter out what doesn’t apply. The more you know and understand about what is happening to your child the more in control you feel.

I remember just standing at Madelynn’s bedside, helpless. As I read and observed what was happening to her, I could be a better advocate for her. The stronger advocate I became the more control I regained. For families with diagnosed babies, who is going to be their voice? As the parent, you are the voice.  It is your job to speak up for them, make decisions for them and always do what is best for them. How can you make educated decisions without the education??

TTFN~