An Important Week

This is Me. Born Aug. 22, 1971 with Pulmonary Atresia

February is Heart Disease Awareness month. More importantly this week from Feb. 7-14 is Congenital Heart Disease (CHD) Awareness week. It’s an important week for me and many of my friends. Its our week. We get to bombard you with facts and statistics about CHD and you get to listen.

So here it goes one out of every one hundred children are born daily with a CHD. That’s one every fifteen minutes. Due to technology and advances in surgery more children are surviving into adult hood than ever before. In fact for the first time ever there are more adults with a CHD now than children. But it’s not enough. Even with all the advances made in the treatment of CHD still nearly twice as many children die of a CHD every year than all the childhood cancers put together. CHD is the number one birth defect world-wide. There are thousands of children born every year with a CHD.

Still with all the children and adults living with a CHD there are few people out there that have heard or know about it unless it has actually impacted their lives. Because of this there is very little funding for CHD. This past year was the first time that our government set aside money to research CHDs.

So those are the facts now let me tell you what living with a CHD is.

  • Taking medication daily and having to miss school and playing with your friends because, you had to have open heart surgery.
  • Being tired or not feeling well, but not wanting to miss out on time with your friends or family.
  • Your gym teacher telling you that your out of shape and lazy and that’s why you can’t catch your breath. And telling you, you’re not really sick.
  • Having people you meet think you’re lying to get sympathy.
  • Having to explain what the scars are from and then having to hear someone say “well luckily they managed to fix your heart” and knowing that isn’t true.
  • Not being able to go kayaking with your fourteen year old son because your to tired and short of breath after loading the kayaks on the car.
  • A life time of knowing that those that love you are worrying about you constantly.
  • A life time of taking medications and knowing that at some point in the future your going to need another surgery because, replacement valves don’t last forever.

CHD isn’t all bad though because it’s also these things:

  • Never taking life for granted.
  • Learning that your capable of more than you ever thought was possible
  • Learning that courage doesn’t mean not being scared. It means doing what needs to be done regardless of how afraid you are.
  • Having a greater compassion for those that are truly in need of it.
  • Knowing what true friendship means.
  • Taking advantage of every opportunity that comes your way.
  • Finding new ways of doing things.

In all I think having a CHD has made me a better person, despite all the negatives. Because the on thing CHD truly is, is finding positives in the negatives.

Please click here to see the people who are affected by CHD.

To end with I want to dedicate this particular blog to a little boy who passed away this past week 1/28/2012 at 19 1/2 months old. Adam Sallee. He was born with HLHS and received a heart transplant just over four months before his passing. Fly High Adam you will be missed.


About jonmrjr

I am a 40 year old survivor of Congenital Heart Defects or CHD for short. This is not another blog about how I survived a heart attack. Congenital means born with. I have lived with this my whole life, as have many others. 1 in 125 babies are born with a CHD, it is the number one birth defect in the world. World wide it kills more children than all childhood Cancers combined. This is my story and how I live with CHD. My hope is to bring awareness to this condition and inspire others to chase their dreams as I do.

Posted on February 3, 2012, in Uncategorized. Bookmark the permalink. 2 Comments.

  1. My son has an AVSD and had 2 open hearts when he was 4 and 5 months old. He aslo has down syndrome and autism. Life is good for him though. I worry about him but so do all mums about their kids. He is 4 now and has a wonderful full life. His cardiologist tells us that his operation was one of the most complicated his surgeons ever had to do as his mitral valve was so malformed. They still worry it will have to be replaced but tell me that the bigger and stronger he gets the better and each check up every 6 months is a great mile stone.

    Every day is a blessing but as I said that is the same for every child. We take extra care to make sure his diet is excellent and every time he gets a cold or flu we are extra dilligent but try to forget about it for the most part.

    I worry more about him making friends and having a full and active life. I know at the start I was terrified about what every new day, minute, second would bring but now I now that I am just thankful that I have been blessed with him in my life. I have met so many amazing people through him. Because of that he is surrounded by the kind of people that most only hope to meet. The kind of people you see on “true story” movies and think “wow” in an unintentionally patronising sort of way. These are now our people, those who know life can be crap, excuse the language, but still know life is amazing and try their damndest to make it so.

    i now run a charity for families of kids with disabilities. I would never have dreamed of doing that before. It has grown to a huge size and now helps so many families. I know its tough and if I could swap hearts with my boy I would but all I can do is make his life as good as I can. So far its going great even though the worry never goes away. The best you can do in any situation is take any pain you have and try to turn it into something positive which you are obviously doing.

    Thank you so much. It is such an inspiration to read about you. Thank you xxx

  2. Tears are still falling down my cheeks from reading this post. You see right now I’m holding my two month old son who was born with pulmonary artresia & intact ventricular septum and he also has a small right ventricle. He is to young to understand that his heart is different & I dread the day when he has to miss out on things because of his condition. I want you to know that reading your story and seeing that you made it gives me so much hope for him. Thank you for sharing.

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