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A Story from the Heart
by Anne Lindsey, mother and CHD Advocate

The heart. It is our life force. The rhythmic pulse with which our bodies are oxygenated and cleansed. Our hearts are responsible for pumping about five quarts of blood each minute which is equal to about 2, 000 gallons of blood each day. In order to accomplish such a feat, our hearts will contract nearly 101,000 times per day. Even at rest, the muscles of the heart work twice as hard as the leg muscles of a person when sprinting. Without a strong heart, our life and normal body functions are in jeopardy.

Congenital Heart Defect Awareness week is February 7th through the 14th. I’ve considered many ways that I, the mother of a child with a congenital heart defect, could raise awareness. I wear my red heart pin throughout the month of February. It’s a subtle gesture, but one that is important to me. The pin sits close to my heart each day. The stitches that are etched across its center remind me of how quickly life can change, and how important and precious the gift of health is.

When it comes to CHD, there are many statistics to quote. I can tell you that each year in the United States nearly 40,000 infants are born with a CHD. That’s 40,000 families whose lives are forever changed. I can tell you that CHDs are the most common type of birth defect. Of the 40,000 babies born with a CHD, 1 in 4 of them will have a critical CHD that will require surgery or other procedural interventions within their first year of life. I can tell you that 75% of babies born with a critical CHD are expected to live to see their first birthday, and 69% of those babies will live to 18 years of age. I can tell you that as the mother of one of those babies, statistics like these take your breath away. But, I can also tell you that there is hope.

Medical innovation and improved treatment options have increased the life span and quality of life for CHD patients. In fact, today there are about 1 million adults in the United States living with a CHD. My own son, born with a critical CHD, is now 11 years old. Yes, there is hope. We find hope in the form of life saving procedures and technologies that continually improve the quality of life for our children. We find hope in surgeons and doctors and nurses and therapists and technicians who do not lose sight of the impact and difference they are making in our lives every day. We find hope in mothers and fathers and sisters and brothers who share our pain and understand our burden.  We find hope in the communities and friendships that encourage and support us in some of our darkest moments.

I can tell you all these things and more, but perhaps the most effective way I can raise awareness is to allow my son the opportunity to speak. My son, Cade, has allowed me to summarize some of his story with you in order to bring understanding and awareness of Congenital Heart Defects.

Although we have always been open and honest with Cade about his heart condition, he says that he didn’t realize the significance of his heart defect until he was about 8 or 9 years old. Around this time Cade was preparing for his third open heart surgery. His last major hospital stay was several years ago at age 3, and much of that time he doesn’t remember. With the realization that his heart was different, came many questions.

Cade always considered himself to be just another kid, but now he realized that these differences in his heart sometimes meant facing big challenges. CHDs are not simple. Complications often arise from the interventions and surgical procedures that are designed to bring relief and repair. Cade, after his third open heart surgery, suffered a stroke which left him paralyzed on his right side. His recovery has been nothing short of remarkable, but the proof is still there. He has a limp and continued weakness in his right leg. He’s also developed other complications which have brought us to our most recent hurdle – preparing for a heart transplant.

Throughout our conversation, Cade talked about how he came to accept that his heart was different. He says his family and friends have helped him realize that it’s not actually that bad having HLHS. He talks about how nicely he is treated by everyone, and this makes him feel a lot better about himself. He knows his limitations. He’ll tire easily if he runs too much and missing his medication would make him feel sick. He notices many differences between himself and other typical children his age. But rather than focusing on these differences Cade is determined to look towards the future. He says, "Coming up, I’m going to have a heart transplant, and I’m going to be really happy about that." He hopes that a new heart will allow him to do some of things his peers are doing now. Perhaps the most important message from our conversation came near the end when I asked Cade what people should know about CHD. He responded, "Well, just because you are different because you have this CHD doesn’t meant that you’re not a normal person." That’s the beautiful truth: Although his heart is shaped differently, it still loves just the same.

*Statistical information was taken from the following websites:

http://www.cdc.gov/ncbddd/heartdefects/data.html

http://www.arheart.com/cardiovascular-health/amazing-heart-facts/

Legislative Breakfast Iowa

The American Heart Association held their first Legislative Breakfast of 2016 on January 13th focusing on the need for a state funded Safe Routes to School (SRTS) program. As a federally-funded program, SRTS provides the financial resources to repair sidewalks, hire crossing guards, and remove the barriers that discourage parents from allowing their students to walk to school. Because Iowa has received limited federal funds, the American Heart Association is encouraging the state legislature to invest $1.8 million to create a state-funded Safe Routes to School program.

Supporters and volunteers from across the state joined the American Heart Association at the Iowa State Capitol to talk with their lawmakers about why they support a state-funded SRTS program due to the health, safety and economic benefits it will provide for all Iowans, and especially children.

 

Wear Red Day Kansas

Thursday, February 4th was Wear RED Day at the Kansas State Capitol.  Thanks to all the volunteers and advocates that made the trip to Topeka to help us fill the halls with RED! We dropped by our lawmakers offices to introduce ourselves and then had the opportunity to listen to the Wear Red Day resolution reading on the Senate floor!