I’ve been swallowed into this war since May 2009 and I’ve watched too many of those we fight for lost. Maybe it’s just me, maybe it’s just because I’m still angry my son was a casualty, but on what fronts are we winning? The Congenital Heart Futures act is the result of many dedicated individuals and advocates hard work and many restless nights. It is a great piece of legislation that addresses a significant problem with Congenital Heart Defects, the public doesn’t know, some in the medical community could care less and no one is funding the research but for the donations of very kind individuals to organizations like the Children’s Heart Foundation, however that said, there isn’t exactly a rush of submissions to the AHA for CHD Research projects either in children or adults. It is fact that the American Heart Association (AHA) directs only $0.30 from every donated dollar to research, and from that $0.01 goes to pediatric cardiology research for Congenital Heart Defects. (Source: Children’s Heart Foundation / Self Research @ AHA) and I can’t find anyone to give me a number of adult cardiology research for Congenital Heart Defects. Remember, these children do grow up, so care doesn’t stop after they have their first surgery. I don’t personally know Steve “The Funky Heart” but I know he had his OHS in 1967 — he’s been living with a Congenital Heart Defect repaired 42 years ago. I can’t even imagine what he faces on a day to day basis, how many times he’s heard, “I don’t know.”
Many fantastic people have started some great organizations to spearhead the problems faced by our community; The Children’s Heart Foundation, Mended Hearts, Mended Little Hearts, It’s My Heart, Saving Little Hearts on a national level, and even more people that have started some great things, like Kelly Manz and CHD Babies, Bobbie-Jo Steward and Join the Fight: CHD, more and more advocates are setting up individual efforts within the social networking sphere to really get the attention of others and to unite those of us that are affected. But what are we fighting for?
In 2005, Bob Wright the vice president of General Electric, and his wife felt moved because his grandson had been diagnosed with Autism, he founded “Autism Speaks”. They attracted a powerful board of directors including world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon. Easy enough when you have an unlimited amount of resources like that. Since it’s creation it has merged with 3 of the national autism organizations. And in 2006 it paid slightly under $1.2m (million) dollars to partner with the AD Council to launch a $25 million dollar Nationwide Awareness Campaign. Check this out, from the AD Council:
Autism is the fastest-growing developmental disability in the United States.* Fourteen years ago, only 1 in 10,000 children was diagnosed with autism. Today, that rate has soared to 1 in 150. Despite this prevalence, research shows that many parents of young children are generally unaware of autism. This campaign seeks to educate parents about the growing rate of autism in this country and to ultimately increase the level of early detection. Because there is currently no cure for autism and no effective means to prevent it, early detection is the crucial first step in helping children with autism. With appropriate early-intervention services, from ages 3-5, between 20% and 50% of children diagnosed with autism will be able to attend mainstream kindergarten. All of the PSAs communicate the startling statistic that 1 in 150 children are diagnosed with some form of autism. The PSAs also encourage parents of young children to visit http://www.AutismSpeaks.org to learn the signs of the disorder. The campaign launched in April 2006. * Centers for Disease Control
Now let me for a moment show you a vision that we probably all share. On January 21st, 2011 the following page was added under “Congenital Heart Defects” on the “Campaigns” section of the AD Council’s website.
Congenital Heart Defects (CHDs) are the most common occurring birth defect in the United States * Today in our country 1 in 100 children are born with a CHD, it has become an epidemic. Despite these large numbers, research shows that nearly all parents in our country are unaware of Congenital Heart Defects. This campaign seeks to educate the public and medical community about the growing rate in which Congenital Heart Defects occur in live births and the need for an increase in early detection as the death rate from non-detection is catastrophic as well as the growing need for medical options that provide a brighter long-term prognosis for these children that will follow them into adulthood. There is no cure for Congenital Heart Defects nor are there any means to prevent it, which is why early detection, education, family support and more research are needed to help both children and adults who suffer from CHDs. With detection at birth, these children face a much greater chance to survive and with research the growing number of children who have complex congenital heart defects and face a small chance of survival past birth, even with current medical treatment, can be given a better chance to survive in the future. All of the PSAs communicate the startling number that 1 in 100 children are born with a Congenital Heart Defect. The PSAs also encourage pregnant women and families to ask their health care provider about adequate screening upon birth of their child as well as the need for research into Congenital Heart Defect treatment. The PSAs direct everyone to [Insert Name of Organization and/or People Willing to Step Up And Get This Done’s website here] to learn more.
I don’t know about you, but I swear to my heavenly father, his son and the holy spirit if I had $2m dollars, this would be done. What it would be doing is simply what we don’t have, the public aware that our children are dying, they face an uncertain future and unless a foundation is formed or merged to take on this task, to educate the public — there are SO MANY PEOPLE SITTING AT HOME THAT HAVE NO IDEA HOW TO GET INVOLVED, AND MOST DON’T EVEN KNOW THIS HAPPENS. There are so many philanthropic people in our country that would jump on this, and they don’t know. President’s and CEO’s of companies aren’t watching TV with their family and see this, and then something happens to them, filled with the holy spirit they feel compelled and send an email, “I’d like to partner up with your oranization and DO MORE”. I know that the chapter’s of these National Organizations have done a tremendous job at bringing chapters like It’s My Heart: Detriot online, people are starting to get effected. But right now the fire is strong, we are motivated — can we continue to trudge along in this battle with the same results we’ve been getting? Is anyone really happy about the fact that we get 10x less funding than Autism? Maybe this is just me, maybe I feel like i’m doing nothing. Sure, Aiden’s story has brought A LOT of impact on a lot of people, he changed their lives in many unique ways — but I feel like making an impact on a few hundred to thousand people isn’t enough for me or for him.
Please don’t misinterpret that I think everyone isn’t doing enough, in fact I’m saying the opposite, we’re doing a ton, but are we really ONE in 100? It is my belief that if we as a community don’t together unite as ONE, we’re not going to achieve something that Autism has in the next 10 years…. and we wanted it done yesterday.
Is it going to take me quitting my job and relying on the charity of others to travel this country by foot door to door business to business to gain momentum for the task that lies ahead – or is there support from those in advocacy positions to rally behind one cause?
Please share your comments and thoughts, input on this matter is extremely important to me.
[…] Here is the original post: Why aren’t we making progress in CHDs? […]
I don’t know why either, Levi. But, I do know I’ll keep fighting for awareness. Cora and Aiden will save lives. We are making progress one person, one day at a time. Just this week, Aiden and Cora educated hundreds about CHDs and the devastation they can cause.
I also have the same feelings as you…I never even heard of CHD til I learn my daughter had one. We really need ONE national campaign so we can all fight the same battle together!
You nailed it. I’m in. (Eve is too!)
Annamarie, 1in100
I feel very strongly about this as well and I was definatley affected by Aidens story. My daughter was born with CHD and it has already affected her life so much. Although her defects were repaired at 6 months, she has many developmental delays due to CHD and some she will have to live with the rest of her life. I think people don’t really understand the severity of CHD and how it affects families, children and adults who are born with it. I hope that someone sees this article and has the means to make a really big difference.
i agree with everyone above! alot of smaller, local organizations is great for the community but something BIG, NATIONAL and ONE is definitely needed.
i talk to everyone i know about Chloe’s CHD. people often say, when they look at her, that they never would have guessed she was on oxygen for the first six months of her life, still gets fed through a Gtube and had OHS less than a year ago. just because her heart is “repaired” doesnt mean her CHD went away. she is still dealing with the effects of everything.
i just cant believe CHD isn’t “out there” like autism and pediatric cancer. does it take some Hollywood actor to have a baby born with a CHD to get things going? the only “famous” person I know of with a CHD baby is Bret Baier. http://www.huffingtonpost.com/2009/06/01/bret-amy-baier-talk-mirac_n_209773.html?show_comment_id=25057968
I’m surprised I havent heard of him doing more with his friends in the White House.
The article is great! I agree with it all.
Wow, Levi!!! you hit the nail right on the head. I bet your wife is so proud of you and I really bet you would be an awesome speaker for CHD. Someday I would love to meet you and Tracy and I do want to be a part of spreading awareness for CHD.
baby Claire’s Grandma
Beverly
Levi, I am with you all the way! I am ordering T-shirts from this website i found http://www.cafepress.com…I don’t know if you have checked it out or not. But you can personalize them. I just typed in CHD Clothing and it was the first site to pull up. It’s a pretty awesome site! I thought by ordering as much T-shirts i can afford and give them to all my realatives and freinds and random ppl, that should help raise some awareness…People always look at Tshirts, whether its standing behind some in the check out line at the grocery store or walking down the mall. I have written Oprah, The Doctors, Dr. Phil and of course no responses in which i think is pretty sad. When ppl ask about Trinity and “why” she has a heart defect and “what” did i do wrong during my pregnancy, i tell them to do their research. It is just really frustrating. You are right ALOT of ppl do not know anything remotely about CHD’s and its pretty sad. I know the Tshirt thing is not much…I should be going to the press….
i too have exhausted myself writing EVERY news outlet! oprah, ellen, good morning america, today show, local news, parents magazine, etc. no response, other than from my local paper. they did a story on chloe a few months back.
Levi-
I believe 110% in what you want to accomplish, as it is the same thing we ALL do. The situation we face is that because CHD hasn’t hit some huge person like Jenny McCarthy who has the money to spend, there is not the visibility we need. Unless that happens, one of us become VERY wealth (which I’m diligently working on) or we all join forces and march under ONE banner, we’re gonna continue building little campfires that quickly burn out.
What I want to see it a RAGING fire that consumes this country from sea to shining sea and we can see that happen but we have to join together and, as the Komen Foundation says, “today, we march as one”. That’s what we need to do in the CHD community…Let’s go for it. If one of the organizations that is currently in existence doesn’t have what we need, then we’ll just build it.
My goal in the next 3 years is to have raised enough awareness that people will be as familiar with CHD as they are with Autism and the other major medical issues in existence. I have the organization, the backing and am working on getting the resources…You in?
Good job on the article. You’re a warrior.
Great job Levi!! You nailed it! I was just thinking yesterday that if I was blessed to win the mega millions(hehe) that I would dump so much into CHD awarness and to help all the families that deal with this everyday. 1 in 100–we do need t-shirts, car magnets…anything to just spread the word. I am so proud to be your friend and so happy the Lord brought us together…Aiden is smiling down at you! Thanks for all your hard work!!
Very well written, Levi. I agree, we do need ONE national organization to put a face to our cause. I found myself just last night asking “What about us?” while watching TV. I see commercials with all these celebrities for St. Jude’s. I don’t want ANY child to suffer from ANY illness/defect. But it rankles me sometimes that more children die from CHD’s than pediatric cancers, yet you don’t see anyone lobbying for us. Where are OUR celebrities? Where’s OUR research?? I commend you and others on what you have done to further awareness of CHD’s. Many, like myself, want to help but don’t know where to start.
I feel the exact same way!!!! ARGHHHHHHHH! It is frustrating and infuriating and very sad. I have thought all those thoughts, I see they’re are many small organizations but agree we need ONE big one, One LOGO, one sign, like the cancer pink ribbon, we need something to unite us. I am ready and willing. It’s sad but sometimes I have wished a child with CHD to be born upon a celebrity to maybe get things moving. Truly I don’t want any more children to be born or have to suffer through this, but I do want change and could not believe there was nothing out there. I believe NOW is our time!
Levi…you definitely hit the nail on the head with this article. There is not enough awareness, even though it does affect so many children. There also doesn’t seem to be one national organization with a main goal to spread awareness and fund research projects. The celebrity recognition would definitely help, but I would not wish any of them to have to put up with what any of us have had to deal with.
I have also been on a letter writing campaign…similar to Kellys. Hope is also going to be featured with some of the local news media through the hospital. I have emailed and/or wrote to the national media outlets but have not heard anything back from any of them. I know there are local fundraising opportunities too, but it would be great if one of the national organizations would spend a little more promoting and coordinating fundraising (this Susan Koman, MDA telethon, St. Judes, etc….). It is difficult from a local level to reach the audience that needs to be reached to make a difference and make CHDs a household word.
I am willing to step up to the plate and do anything it takes. I have volunteered with CHIN and CHF, but there is no real coordinated effort…other than trying to get proclamations from state and local governments. I don’t know how that will help, but I did my part and sent requests. Maybe that is the takeaway from all of this…we need to get more involved to make anything happen. The only problem with that is that if you have a baby with a CHD chances are you don’t have the time to get really involved because you are spending so much time taking care of him/her.
I just realized my comments are everywhere and I have offered pretty much nothing, but I figure I will submit and pray that as a group we can make a difference.
Wanted to add, I think we not need to reinvent the wheel, but maybe all the organizations already out there can unite into one huge one. Merge the efforts and synergize.
Levi…you are amazing. The fire and passion you have for raising CHD Awareness is what our cause needs to reach the levels of Autism Speaks. I fully believe our day is coming…we will get there. The frustrating thing is that … it’s not happening soon enough for ANY of us, much less those who have lost children to CHD. And, too many children are being dx too late, etc… It’s sickening.
I full believe once we get our sponsor or national spokesperson, this will take off like a shot. I think in order for all the orgs to merge, there will need to be a serious reorganization, we’d be dealing with politics, etc… I think what is more likely is that one of the orgs takes the lead and moves forward as the forerunner in this fight…and then, others jump on board. It remains to be determined which of the organizations that is.
I have lived with it for 32 years. and I am now hearing more and more since my son was born also with CHD. We both have Tetralogy of Fallot.
We are getting out their. The last season of ER the last one had something about CHD. one of the Heart camps in CA. Their is also a movie out their called “Something the lord Made.” about the very first Open Heart surgery. “Blue Baby syndorme” or aka. tetralogy of fallot.
We just have to keep pushing for more awareness.
Keep it up and we just have to have our voices heard.
Christy (TOF and a heart mom)
Levi-
Well put. Everything you are doing is amazing. We do need a nation wide campaign.
Even though I have a friend whose baby was born 4 yrs ago with a CHD I never thought it would happen to us…I had no idea that CHDs were so common and it is sad to me that our reality is something that most people know nothing about.
Knowing that it’s only a matter of time before my sweet baby will need another heart surgery I am even more motivated to do more.
i came across this on ashleys facebook and i totally agree!!! I never heard of CHD until my son was diagnosed at 19days old. my husband and i have been trying to think of ways to spread the word and if we can be of any help let us know!! You are a great speaker!!
Levi-
I believe your dream for 2011 will happen! We are amazing parents, to do what we do. Allie and I are in to what ever it takes.
I know Sylvester Stallone’s daughter has a CHD.
Its late, I’m tired and sick and may be a silly suggestion but, what if there was an area where we could all virtual brain storm ways to make this happen… What are the steps we need to take to make this happen?
Brilliantly written BTW.
I totally agree with you. The local organizations are good at bringing people together, but to effect change we need a movement. I see new little organizations pop up all of the time (each time a new parent learns the news), yet without collective action our childrens’ battles remain only local. To obtain the necessary research and awareness dollars, combination of these local organizations and the driven people that make those organizations work is needed. Thank you for putting this out there.
Great article, One of the best I lately read. Thanks for pointing such important issues, I think we should do muach more then we’re doing now. Great, I will share it with my friends.
I have a support group online help co mod. WE”VE been around for a very long time. My daughter is 11. You can find it on yahoo, chd_babies. very well written article. I also have a chd group on my ning group. I’d like to see more money given for special needs for these special kids. NONE is given to help the parents. I am going to link this to as many outlets as I can. I didn’t read it all, but I will.
carole
[…] few days ago I posted an article “Why aren’t we making progress in CHDs?” on my personal blog which covered some of the issues I feel are hindering us as a community […]
Very well written. I’ll never forget being so disappointed that there wasn’t anything nationally binding the CHD community together and helping us to fight this war. It would have been helpful to know about CHD before it happened to my son. It would have helped to be a little bit more educated and to have hope. I look forward to continuing this fight as a team in hopes that one day Aiden and all our other angels will win.
By the way, Aiden is absolutely precious.