Letter From a CHD Survivor

February 12, 2010 at 11:06 pm 14 comments

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

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Entry filed under: CHD Awareness, Congenital Heart Defect, Open Heart Surgery, tetralogy of fallot. Tags: , , , .

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14 Comments Add your own

  • 1. Ratuck3  |  April 15, 2010 at 11:37 pm

    You are a inspiration to many!! Such a powerfull Letter! Thank you for writting it. I will be reading it to Kimmy when I get home. Iam also going to print it out so we can keep reading it. I know the pain that I feel for Kimmy and right now she is too young to fully understand what happens but one day she will know. Will be praying for you with your surgery.

    Reply
  • 2. Kristine  |  April 25, 2010 at 12:37 am

    Wow! Abby you certainly picked up your mother’s gift for writing. You are AMAZING. I’m going to share your letter on Cora’s facebook page. Hope that’s okay. Lots of love. xoxo

    Reply
  • 3. Wally Beddoe  |  April 25, 2010 at 1:24 am

    Abby, you are very smart and brave, and pretty! Just remember that your heart is working very well in a way, because you are a loving and caring young girl. I’m proud of you and of your heart! Thank you for your letter and for caring about others. YOU MAKE A DIFFERENCE!! Keep it up!

    Wally Beddoe
    Trumbull, CT

    Reply
  • 4. Kristy  |  April 25, 2010 at 1:27 am

    Abby, you are an amazing little girl! I will be praying for you and your surgery. My son is only 7 weeks old but has had 1 open heart surgery and has at least 2 more to go through before his heart is “fixed.” I pray that when he is 10, he will be as strong as you are! God bless you hun!

    Reply
  • 5. Candace  |  April 25, 2010 at 2:58 am

    You are such a strong and beautiful young lady. My daughter is 3.5 years’ old and has Tetralogy of Fallot. She had open heart surgery at 3 months’ and will need a valve when she is older. Thank you for sharing your journey.

    Reply
  • 6. Steve  |  April 25, 2010 at 3:02 am

    My dearest Abby;

    I’m like you, I have a heart defect, too! I’m a lot older than you – I’m 43. I’m almost a tired old man!

    In your letter you said that after your surgery “your heart will be fixed and I won’t have to deal with lots of these problems anymore.” Well, I hate to say that’s not always true.

    Back when I was growing up that’s what they told us – because no one knew any better. The doctors did actually think we were fixed, but as time went by and we all got older, we started having more problems. After all, our hearts may have been patched up, but they are still broken – they are like a broken vase that has been glued together. It may fit together but there are still a lot of cracks and it isn’t as strong as it could be.

    So don’t assume that you are fixed – to stay ahead of any problems you should keep seeing a Cardiologist all of your life, take your medicines, exercise (if your doctor tell you that’s OK) and take care of yourself.

    You’ll never be fixed – I’m not fixed, either – but there is no reason that you can’t do a lot of the things you’ve always wanted to do!

    Your heart buddy;

    Steve

    Reply
  • 7. Gwen Wright-Thornton  |  April 25, 2010 at 4:25 am

    Hello Abby, my name is Gwen, I was also born with TOF I’m in my 50’s now, and I thank God for you. When I was comming up there was no one to share what I was feeling or how I felt. You said it all, now I can tell you as long as you stay positive, and have faith you will survive. I had my Total Correction done in 1976, I now have one daughter and 5 beautiful grandchildren.
    It’s still a struggle for me health wise but only because I could not get my surgery early enough because they were just learning new procedures..You are going to be fine and such encouragement to others I pray that we will continue to stay in touch and I will be along with my prayer partners praying for you espeicaly on June first. Don’t be afraid you won’t be along you will carry all of us ADCHD and CHD children with you…so stay strong and be blessed Heart Hugs <3<3 to you,

    Reply
  • 8. Lucy  |  April 25, 2010 at 6:40 am

    Hi Abby,

    I’m Lucy and I too am 10, I live in the UK. I was born with CHD too. Mum could tell you all of the names of the CHD I had, but I just tell people about the Hypoplastic Left Heart. The doctors tried to fix my heart. I had an operation when I was 2 days old and another when I was 6 months old. I also had a pacemaker. When I was 5 the doctors told my mum and dad that they couldn’t fix my heart any more. I needed to have a heart transplant. I was lucky and received a new heart when I was 6.

    I agree with what you say about being teased – I still am now. I still get out of puff and can’t run around like the other kids. The trouble is they don’t seem to understand and leave me out of loads of things.

    I too like to read, play video games and listen to my ipod. I do have lots of other interests too. I like to write, I think one day I would like to be a writer.

    Anyway, if you would like to stay in contact you will have my email address from lme eaving this comment.

    Lucy xxx

    Reply
  • 9. Vikki  |  April 25, 2010 at 1:58 pm

    Abby,

    Thank you for sharing this piece of your life with the world! You are a very brave and strong person! As a pediatric nurse, I am always in awe of the tremendous courage that children like yourself possess, regardless of the situation.

    Blessings to you & your family during your upcoming surgery, and thank you again for taking the time to share your story.

    love and hugs,
    Vikki

    Reply
  • 10. Mendi  |  April 26, 2010 at 1:35 am

    Abby, What a couragous young lady you are! You have a beautiful gift of writing. Although I do not have CHD, I feel for you and all others who do. Growing up, my parents became guardians of my cousin who had heart problems. I saw his pain and suffering daily. Unfortunately, he is no longer with us. He lived until age 21. But he lived a wonderful life, just as most teenagers. Nothing stopped him, just slowed him down a bit. He’s now a heart angel looking down on us from Heaven. My advise to you is do all tht you can do, but know your limitations.

    I will pray for you and your family for your upcoming surgery. Thanks for putting your feelings into writing. It’s not always easy to do. I ,myself an a published poet and love to write poetry. Keep up the worderful work.

    Wishing you the best,
    Mendi

    Reply
  • 11. Bridget Krumbach  |  April 28, 2010 at 4:18 am

    Wow Abby you are such an amazingly brave girl! I have a niece who turns 1 next week and faces her 4th OHS in 2 weeks. Reading your story makes me extremely hopefull for her future with having to deal with her CHD. You are an inspiration. I will be thinking about you this summer.
    Wishing you many many amazing years,
    Bridget

    p.s. I would love to give you something that I made in honor of my niece. Please email me your address and I will mail it to you. I think you will love it! My email address is bridgetkrumbach@hotmail.com

    Reply
  • 12. Helen Laverty  |  May 4, 2010 at 11:58 am

    Abby you are to me and so many others an inspiration i’m fairly sure it was not very easy to write that letter but you have touched many many people x
    I have printed your letter and stuck in my daughters scrap book that i am keeping for her to read and look at when she can understand Nancy will be 2 in September and was born with Hypo plastic left heart a chd that mean’t she needs a series of 3 surgeries 2 of which she has battled through already and the 3rd could be in 6 months or 6 years it depends how she gets on. I know that your words are going to mean so much to her as she grows and finds all of those problems out for herself and comfort her to see how you cope with them 😉 so thank you so very much xx
    I wish you evry success in your future and evry bit of strength to see you through the next hurdle your OHS this summer evry bit of your journey makes you stronger just like my little girl all our love Nancy and Helen xxx

    Reply
  • 13. Joanie Dorsey  |  May 13, 2010 at 3:37 pm

    Beautiful Abby, you are such a wise girl. I was born with tetrology of Fallot 54 years ago. I was not that brave when I was your age. I had surgery when I was 10 months old and when I was 17. My life is very good. I was healthy enough to become a mom to two great children and now I am a grandma!

    I just wanted to grow up and be a “normal” person. I hated being teased for being so skinny (Boney Joanie), having purple fingernails and lips, and never being able to play at recess. I also did have some great friends. Ones who would wait at the end of the block on their bikes until I caught up.

    I had a pretty normal adult life until 2 years ago when my heart misbehaved and starting beating way too fast. The doctors fixed it and now I have an ICD. That’s when I learned to find people with CHD and tell my story and to help educate other people about CHD. I wish I had started when I was your age but we didn’t have the internet then.

    You are a great inspiration. I wish I had known someone like you when I was young. Keep up the great work you do.


    Joanie Dorsey

    Reply
  • 14. harpersmom  |  July 15, 2011 at 10:09 pm

    To Abby’s Mom:
    My daughter had TOF corrective surgery when she was 20 days old. The surgeon patched 2 septum holes with Gortex, and had to enlarge her pulmonary valve from 7mm to 10mm wide, so that enough blood could get to her lungs. By doing so, her pulmonary valve was damaged, causing regurgitation into her right ventricle. This added pressure enlarges her heart wall, while making the cardial wall thinner- which is very bad for heart health.

    She had one cardiac MRI at 1.5 yrs to measure the pressure. It was high, yet the Drs let us come back 6 months later for a 2nd cardiac MRI. This time, the pressure was so high, that the Drs will replace her pulmonary valve (PVR) with a bovine valve at 22 months of age. She will need future PVR surgeries since the valve does not grow with her heart. The Dr. will also put in a PV conduit (at least 16mm diameter) so that the next time she needs surgery, she MAY be able to do it via the Melody transcatheter valve. Google melody valve, for more information. The site even has a map of all the hospitals/Drs that do this throughout the nation. To tell you the truth, I am a little relieved that is is not a candidate this time around, because this is such a new procedure, just recently approved by the FDA, I would like to see more success statistics on it down the road. I remain thankful for medical technology and empathize with the parents of CHD children in the world who are not so fortunate.

    To Abby:
    as a heart mom, I enjoyed your letter; I will have my daughter read it when she is old enough. I am an elementary school teacher, and hope you had a chance to read your letter to your classmates and/or friends. You are a smart, brave, and beautiful girl. By reading the letter, I can already tell that TOF has made you a strong soul, ready for all that your lovely life has to offer! You are my role model.

    Reply

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