I just wanted to make sure this information got out and I wasn't sure how many of you look at the comments so this is a comment left to me by my sister in law Nikki. She's the mother of Abby. Also I saw this on Nikki's CHD website and wanted to share this post with all of you...I hope this is ok Nikki.
NikkiAWardell said...
..." If you don't mind, I want to put in a plug for the testing you talked about in your last post! Lots of good people are currently trying to get laws passed for the routine screening of newborns for heart defects. The test, which is non-invasive and involved no needles, pricks or pokes, is simply a little red light pressed on a finger or toe or foot for a few minutes. It is painless and measures the oxygen levels in the blood. Hospitals currently have the ability to do this already...it just isn't routinely done. So, until legislation is passed...ask for this test on your newborn. Low results don't necessarily mean a CHD is present but signal a need for more testing and soon. Thanks Kris! Your awesome!"
Letter From a CHD Survivor"I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either. If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.
Dear children with CHD,
I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.
Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.
Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.
Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.
Having this heart defect isn’t too fun, but it isn’t always bad. My life is a lot like my friends. I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things. I get good grades in school and like to shop for clothes.
Doctor’s and nurses can do a lot to help us overcome our heart problems. This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.
Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials. Let’s try to deal with it together.
Your Friend,
Abby"
