CHDs affect people everywhere, even here. This is story of one mom who, in seeking to make a difference for her son, made a difference for many. A little light shines a long way in the dark. Our world needs awareness. CHDs are a problem, even here in Iowa. Here is Lisa's story.
Those first several months were a blur. It was a very overwhelming diagnosis and there was very little support locally. I spent the majority of my energy taking care of a child who had to go through multiple procedures, all while trying to understanding his complex defect and what it meant for him. Because of this, I did not get actively involved in promoting CHD awareness until after my son had his third open-heart surgery at the age of 18 months.
This time of life was exhausting and scary, but it was the impetus for my involvement in CHD awareness and the inspiration for founding a support group for families with children who have CHDs.
Through the strength this support from others gave me, I wrote the governor, and encouraged him to proclaim February 14 as Congenital Heart Defect Awareness Day.
We celebrated the governor signing this Proclamation at the capitol in 2000. There were representatives from the governor's office, the American Heart Association, and several hospitals including the University of Iowa Children's Hospital. It was my great honor to promote CHD awareness in our state and help support other families who have children with congenital heart defects. Truly, it was out of my comfort zone to do such a thing, but when it comes to your children, there isn’t anything you cannot do.
The success we have seen from this Proclamation is certainly not because of my own abilities or talents. Love for my son, the desire to bring comfort to those going through similar situations, and the great need for awareness in our state made this a successful endeavor.
If I were to give one piece of advice to parents, it would be to trust your instincts when it comes to your child and never be afraid to advocate for them.
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