By: Michelle Rintamaki, President of Kids With Heart
I recently saw some moms being discouraged when it comes to their efforts for Congenital Heart Defect Awareness. Any effort you make has an impact, whether you realize it or not. Your effort may be something as life changing as sharing your experience with a mom who does not yet know her unborn child has a heart defect. My favorite example of this was with our local Kids With Heart support group. We had a family hayride at a local ranch. The driver of our wagon was a pregnant lady. Her baby was not due for another three months. This was back before the days of cardiac ultrasounds as routine. After the hayride through the woods, we invited her back to the cabin to have dinner with all the “heart kids” and their families. She got to witness all of the “heart kids, at various stages of their surgeries, running around, having fun, with their siblings, hear the conversations between the moms, dads, and both. It turned out that when her baby was born 3 months later, she was diagnosed with several heart defects. This mom has told me many times how much it helped her to deal with this devastating news because she had been at the hayride. While I could share several other positive stories, this one is my favorite. This is how I came up with our title for our Kids With Heart brochure: EVERYONE SOMEWHERE KNOWS SOMEONE AFFECTED BY CONGENITAL HEART DEFECTS!
Being involved in Congenital Heart Defect Awareness efforts since 1991, I can tell you that CHDs are much more known than they were when we started on this road. There was no such thing as an IEP for kids with CHDs, there was no such thing as special services for the heart kids, in school or sports or anything else. The first recognized Congenital Heart Defect Day was February 14, 1999(?)- pretty sure that was the year. It was a national proclamation effort that was started by a mom, Jean Imperati, and aided by a lot of different support groups, parents, and at that time, the few CHD organizations. Now, we have Congenital Heart Defect Awareness Week! Yes, it gets frustrating but seeing people like Jimmy Kimmel come out and talk about his child's chd just goes to show you how far we have come. Over the years, CHD affected many famous celebrities but they never wanted anyone to know. The fact that it took Shaun White this long for him to come forward to talk about his heart defects should be an indication of progress. Not only that but the multitude of non-profits dedicated to congenital heart defects is now overwhelming as well as the advocacy work that is being done. In addition, there is a huge variety of congenital heart defect awareness clothes, pins, etc. The very first Congenital Heart Defect Awareness Ribbon Pins were made by hand by Gabrielle Harlow, a mom from Maryland, and was then modified so it could be mass produced for Kids with Heart National Assn for Children's Heart Disorders, Inc. Gabrielle also started the Congenital Heart Defect Awareness Quilt Project under the Kids with Heart National Assn for Children's Heart Disorders, Inc umbrella and is now her own Non-Profit organization.
Back in the 1990s and early 2000s, the American Heart Assn wanted nothing to do with congenital heart defects. It has been in the last 5-10 yrs that they have gotten involved at all with heart defect research. All of this has been accomplished by parents like you who got involved on a small scale to make a BIG DIFFERENCE! Remember, there is strength in numbers and to quote a favorite phrase: United we Stand, Divided we Fall!!! Please do not give up!!!!
THANK YOU FOR ALL THAT YOU DO!!!
PLEASE WEAR PURPLE FOR CONGENITAL HEART DEFECTS ON FEBRUARY 11TH