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Jan 18, 2010 
The fire that is Congenital Heart Defects has been lit for years but it’s never burned with the ferocity in which it has today, maybe it’s that 110 children are born every day with a Congenital Heart Defect, maybe it’s that 11 die, maybe it’s that both of those numbers are smaller than what they really are from a failed reporting system, maybe it’s that people like Gaines Adams a star Defensive End for the Chicago Bears are dying at 26 years old from one or that Brittany Murphy, a Hollywood Actress loved and adored by millions suddenly died from what her mother is saying was a CHD.Certainly the work of organizations like the Children’s Heart Foundation (http://www.childrensheartfoundation.org), Congenital Heart Information Network (http://www.tchin.org), The National Congenital Heart Coalition and others (see a full list here) have sponsored legislation in the form of the Congenital Heart Futures Act that has made it’s way into the final Senate Health Care Bill thanks to introduction by Assistant Senate Majority Leader Dick Durbin (D-IL), Senator Thad Cochran (R-MS) and Represantatives Zack Space (D-OH) and Gus Bilirakis (R-FL).
Having a chance to speak during the introduction of the bill, Senator Durbin said, “A child is born with a congenital heart defect every fifteen minutes, despite the prevalence of congenital heart disease, research, data collection, education and awareness are limited. This legislation will expand research and broaden its scope to help those currently living with congenital heart disease and perhaps, one day, find cures.”
The bill will establish a National Congenital Heart Disease Surveillance System at the CDC to track exactly how often CHD’s really occur and why they do in people of all ages. Finally we may have the real number of how many children see the light of this world with a congenital heart defect and the number of those that see the light of heaven leaving one behind here on earth.
The stories and lives of those affected by Congenital Heart Defects fuel the passion of advocates and breaks the hearts of anyone who hears or reads one. Every day there is an Aiden Beers, a Pierce Helms, a Cora Brite, a Hazel Heidelberger and at least 7 more children who die tragically shattering the hearts of thousands and motivating us that the war we are fighting is very real.
However there is so much hope to be had, so many are picking up on the messages that so many advocates like CHD Babies and Cora’s Story share: Congenital Heart Defects kill, there is no cure, funding is scarce, awareness is even worse. This year many states have jumped onto Congenital Heart Defect Awareness Week (http://www.thcin.org/aware) and more state proclamations are expected. Events of the first of their kind like the 1in100: 1 Day. 1 Mission. 100 Cities (http://1in100.org/one-day-one-mission-100-events/) are starting to take shape and involve more people than ever before.
Single individuals have been making so much headway like Bobbie-Jo Stewart and Join the Fight: CHD have successfully reached out to stars like Jessie Farrell which has helped spread our message to so many, it’s only a matter of time before someone like Oprah comes to the understanding that this community desperately needs help and with attention we can save the lives of so many, isn’t even just one worth it?
We’ve been able to successfully use social media like Facebook, Twitter, blogs like this and many others to bring a coordinated effort to what once seemed impossible. We’ve connected families like Leah Helms and organizations like Saving Little Hearts together to get care packages of much needed items to families in a Little Rock CICU exactly when they needed it most. Just as important, thousands are joining prayer groups dedicated to helping these families pray for the many needed miracles in their time of need, also becoming aware of just how tragic Congenital Heart Defects can be.
For as long as our children and friends continue to suffer from Congenital Heart Defects we must continue to spread the word, use our talents, connect families and organizations, raise money and find new means of treating and preventing this disease from affecting one more person, until that day our work is not done and we must not remain silent.
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6 Comments
Very well said! The picture of CHD today is tragic, there continues to be no cure and tremendous loss. There is hope, through the activities of individuals and organizations working together to create awareness, provide hope and support others with CHD, we are making a difference – survival rates are improving, lifespans are increasing. However, as we all know, there is still work to be done. It is like a glacier, the process may be slow, and painful at times, but the result is that together we can change the landscape of CHD and improve the quality of life of those affected by it.
Nicely said! The great Winston Churchill said that people occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing ever happened.
It’s time to make the truth so evident that there is no way to brush it off. Such good work is being done…so many people are mobilized. If just one life – ONE – is saved or improved, the work has been worth it.
Amazing! Thanks for mentioning me. Also, don’t know if you read that there was basketball player in Southern Indiana who else died of an enlarged heart this week. So beyond sad. Makes me want to work harder.
You have a great way with words and I think that you speak for the CHD world wonderfully, you do a fantastic job of keeping tabs of the whos and whens. Thank you so much for your work.
There are tears on my face and there are goose bumps on my arms right now!
What A AWESOME POST!!!
Thank you so much for sharing and May God Bless You and All OF OUR CHILDREN AND PEOPLE IN THIS WORLD SUFFERING WITH CHD!
Blessings,
DeAnn & John Money
Lex’s Mom & Dad (heartoflex on blog4CHD site)
Thank you for spreading awareness of this debilitating and painful condition.
We are trying to do the same in Bahrain through our Rotary Club of Adliya. Our major project this year is to raise funds to build a centre at the main hospital for the diagnoses and treatment of congenital heart defects in children. Our aim is to raise about $265,000 to purchase some necessary equipment and to train a lead doctor and supporting nurses to run that centre in order to make it sustainable.
We would love to use the above picture in our campaign and would like to see if it is available and its copyright allows us to use it. Please do let us know as soon as you can, and if possible, provide us with a higher resolution version.
Alternatively, we can use the picture as an inspiration and can commission a local graphic designer to copy or customise the style for us. With the original artist's permission of course.
Thank you once again.
Mahmood Al-Yousif
President, Rotary Club of Adliya
http://rotaryadliya.org
mahmood_at_rotaryadliya_dot_org
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