Thursday, January 27, 2011

Shout it to the rooftops!

Lately I can't help but think about everything we experienced this year. About how blessed I am to have Jake in my life. 6 babies have died from HLHS this week, those are just the ones that I know about from facebook. I am angry. I am frustrated. I am heart broken.

Ask most people and they don't know what a CHD is.

CHD= Congenital Heart Defect

This is what CHD looks like.
Jacob post surgery

This needs to change. I can throw out facts all day long, there are many...
• CHDs are the #1 birth defect and #1 cause of death by birth defect
• 1 in 100 babies are born with a CHD
• 4000 babies born with a CHD won't make it to their first birthday
• Twice as many babies die from CHDs than all pediatric cancers combined yet pediatric cancer gets 5 times the funding.

Why don't people know what a CHD is?
Because children with congenital heart defects look healthy. People look at Jake and can't believe that he only has half of a heart. I am not down playing pediatric cancer so please don't think that. It is horrible and I feel so much for those children and their parents. I am just using it as an example. Everyone knows that kids get cancer. We see it. They show symptoms on the outside. CHDs are so deceiving. Kids with congenital heart defects look like any other kid. Their scars are covered by clothing yet deep in their chest their hearts tell the true story. They are sick. They are fragile. They could be taken from us at any moment.

Until the 1980's there was nothing that could be done for Jacob's heart condition. Now some institutions have a 93% success rate. But that is only for their child to live until age 5. There is no cure for congenital heart defects. My son will always have a single ventricle heart. He most likely will need a heart transplant at some point in time.

February is heart month. I beg each and everyone of you to help educate people about Congenital Heart Defects. We need people to know that they are out there. Knowledge is power. Awareness brings research. So many babies don't make it, many more are fighting this battle everyday. If you think it could not happen to you think again. CHDs know no bounds. Congenital heart defects can affect anyone. What if it were your child?

I plan on shouting to the roof tops. If I can educate one person on CHDs it is worth it. Our children need you. In the 80s HLHS was 100% fatal and now there is a 93% success rate, imagine what we could do in another 30 years. Spread awareness, Save lives!

Will you help me?

What I am doing:
• TV interview with WCHS8/FOX11 which will be part of a series the American Heart Association is doing on Survivors of Heart disease. We filmed this today and I have to say that Jake rocked his first interview! (Air date and time will be posted later)
• Article in the Go Red section of the newspaper promoting CHD awareness.
• Interview with WSAZ channel 3 to air on CHD awareness week (Feb 7th through 14th)
Heart Ball (Jake's story and why its so important to donate)
Daily Mail (Newspaper) article on Jacob's Journey
• Heart Walk: April, Huntington WV
• Heart Walk: September, Charleston WV
What you can do:
• Tell someone about CHDs.
• Donate blood.
Children being treated for cancer, premature infants and children having heart surgery need
blood and platelets from donors of all types, especially type O.

• Donate to help fund CHD research:
American Heart Association
Children's Heart Fondation
Congenital Heart Information Network
It's My Heart
Little Hearts
Mia Marrone Heart Fondation
Mended Little Hearts

Thank you for supporting Congenital Heart Defect awareness!


  1. I want to commend you for all your efforts in raising CHD awareness. I am following in your footsteps to the degree that I am able. I have borrowed your words because you have so eloquently written them. I admire you for all you are giving back.

  2. Great post! I am working up a note to paste on Facebook to share with all my friends and have borrowed your quick facts and links to donate too. I hope you don't mind. :) Thanks for all that you do!

  3. Sorry I didn't ask this in my last comment, but would you be willing to email me a copy of the article you are having run in your paper? I would like to try and get it to run in newspapers around here as well (Houston TX.)...or use it as a go by. My email is Thanks!

  4. Jennifer,
    Thank you for the kind comments about my post. My article that is running in our paper has CHD facts but mainly tells Jacob's story. I don't think it will help for the paper in Houston, TX unless you were wanting a story about Jake in there. I assume you were wanting to tell your own story about CHD, if I am wrong let me know and I would be happy to send it to you. Feel free to borrow any facts from this post for your facebook page!

    Thank you for all of the support!