The Lay of the Heartland, Part Two: It’s Personal

My Love Affair and Break Up with the American Heart Association

Almost nine years ago, I was a brand new mom who just returned home from a journey to California to save my newborn son’s life with Liam’s first open-heart-surgery.  I saw that there was a heart walk in Denver and I wanted to go, but I was recovering from a brutal emergency c-section.  I planned to return the next year, but I was then nine months pregnant and Moira was born a week after the heart walk. I finally got my chance a year later, but we got completely rained out. Our relationship was not off to the greatest start.

I raised some good money that year, 2005, but since I didn’t get to walk I was pretty disappointed.  Then, the next year, Liam had his fourth and fifth open-heart surgeries.  The week between those two surgeries, Liam nearly died, and I spent the many long hours at his bedside raising money for the American Heart Association’s Heart Walk.  I used my mother’s cry to the world and testament to Liam’s suffering to raise nearly $10,000.

When we went to the walk, Liam was still recuperating, couldn’t eat more than a gram of fat at a time, but was off his IV antibiotic.  Before the walk I was interviewed on  TV, addressed a crowd of 10,000 people, and was thrilled to reunite with Kristen, another heart mom we met during Liam’s second heart surgery and her daughter Rose.  Liam made most of the walk in his stroller, but he got out for the last few steps.  Since he was about the last person across the finish line the Blue Angels flew over in their jets . . . it was a glorious moment.

I kept at it for a year, spoke at a few events, and I enjoyed the attention.  I liked the attention not because I’m full of myself but because I was so lonely and isolated with Liam’s disease. I thought I was doing good things by bringing attention to the fact that babies have heart problems too.  But then, in 2007, it all came apart.

I guess I should have been suspicious when the nasty old bat handing out survivor hats at the heart walk refused to give Liam one until I showed her his scars, still red from having five open-heart surgeries before he turned three.  But it ended for me and the AHA after I’d formed a large team that raised over $20,000.  I wanted to know what congenital heart defect research efforts were launched with the money we raised . . . that’s when I first learned it was less than 5% regionally, and that was good. Nationally, the American Heart Association is on the record with spending about 1 penny per dollar on CHD.

Now, I could have lived with this, I really could because they spend their money on childhood obesity programs which are inherently good and to fight cardiovascular disease, which is necessary. And, those necessary and noble programs should be funded, but not at Liam’s expense, and not in his name.  Here is why I won’t “play nice” with the American Heart Association:

  1. The AHA won’t let us give directed funds.  I must make a single personal donation of at least $10,000 before they’ll let me tell them how I want it to be used or to make sure they use it on CHD.  I’m not rich, so I can’t change this.
  2. The AHA uses 100% CHD kids in their Jump Rope for Heart advertising, but again 1 penny goes to CHD.
  3. It’s not really one whole penny, in that penny is a mix of “trickle-down” research that’s meant for adults with acquired heart disease and it may or may not help kids with heart defects.   I have more about Jump Rope in Part Three.
  4. The AHA has no problem at all refusing to do more directed funding toward CHD but have no problem at all trotting out women with CHD for their Go-Red program when G0-Red is all about behavior change.  No change in lifestyle is going to make an adult woman’s heart defect she was born with go away.  Now, if they were funding pregnancy studies for women with CHD with that money then I’d be first in line to make a donation.
  5. The last time I looked, about two years ago, many of the top five walkers in several national heart walks were walking for kids with CHD.  The big bucks are coming in to help people change their behavior and fund research for people whose heart disease might have been prevented on the backs of children who are not being significantly helped by the AHA.
  6. Most of the people on the ground for AHA don’t know the difference between Congenital Heart Defects and Adult Onset Cardiovascular Disease, so they are not making the narratives clear for donors or volunteers.
  7. I know a great many pediatric and adult congenital cardiologists and surgeons  from several hospitals through my work as an advocate and they’ve confided to me how unwelcome and hopeless they feel about trying to get minimal grant funding from the AHA.  Writing a grant application is very time-intensive and when they feel, and rightly so, that their work will not be funded, they aren’t going to apply.  This means a glut of applications go through the NIH and National Heart, Lung, and Blood Institute, which only give 3% funding to CHD. . .

So, this is where my relationship with the AHA stands today.  I will share more about Jump Rope for Heart because that program, I feel, is terribly deceptive, but in short I’m really not willing to work with the AHA on their own initiatives or for their own benefit until they address the issues above.

Again, I’ve been called “influential,” but I am hardly going to impact a one billion dollar charity machine with my little blog.  After all, if I had friends who could make $10,000 at a time donations, I’d just do that and change the organization from within.  Instead,  I would rather just get people like you thinking about these things so you can decide if they you to “buy a heart” the next time some store asks you to donate to the AHA.  What do you think?


10 thoughts on “The Lay of the Heartland, Part Two: It’s Personal

  1. I’ve kept quiet with my feelings about the AHA, but wanted to add another personal experience. With the pulse ox bill in Indiana, they didn’t help at all. At that time, they weren’t supportive. They did nothing until it was passed and the national body was supportive. Last week? A reporter talked about how they were a main moving point behind the pulse ox screening in an article about other things. Obviously an AHA Indiana spokesperson fed them that line. They knowingly and purposely used my work to further their own name. Just like they’ve used the pictures of tiny heart kids to get donor dollars. I want change. I want CHD parents and advocates at the AHA table. I want them to stop using our efforts and our children for their financial gain.

  2. I am really glad you have shared your experiences with the world. People need to read this and know that the AHA is quite deceptive in its motives to raise money and where the funds are allocated.

    We donate to the March Of Dimes because they DO care about CHDs, research and things like pulse-oximetry – they WANT to save our babies. Thank you again for this eye-opening post.

  3. Interesting perspective. I had an experience with AHA recently that made me uncomfortable. My son was invited to their black tie fundraisers to hand out blinking hearts to donors. They stuck all the families way out of the way from the main party to eat and then got all the kids without any warning and made them rush around to get lined up. They got baloons to identify them while handing out hearts and then forced all of them to go outside and release them, which caused some tears. It was just a really disappointing evening going into it thinking it was going to be something special for the kids and it felt like they were used. And the party attenders… really annoying and demanding about those darn blinking heart.

    1. OMG Jenna, I have tears over this. I was half hoping I would hear a few good stories about the AHA because my friend, who I won’t name until she commits to writing her piece, was so positive about her own experiences with the AHA. We had discussed this and hoped that there would be a mix of stories. Yours is truly, truly heart-breaking that your child was so obviously and rudely exploited. They didn’t let him keep the balloon! Lord! (((Hugs)))

      PS I wish I could give him a balloon.

      1. Amanda – My little guy was actually okay with the balloon thing. He bought the “isn’t it cool to let a balloon go way up in the sky” line they were selling, but not all the other kids did 😦 or the wildlife potentially harmed by sending latex flying. The event wasn’t terrible and we were there as volunteers, so I guess we should have been grateful for the free mediocre Hyatt food and our own blinking heart pins we didn’t have to donate $100 for. It was just disappointing spending so much effort getting everyone dressed up for the evening and not feeling like the kids were really part of it.

  4. I’m about the penny thing recently and I can’t believe that AHA is like this! I will be speaking with the coordinator for our Mended Little Hearts group. And also our senior leader in the group who has ties to the AHA. Plus be posting a link to this blog entry everywhere I can think of!

  5. I thought they should invite the older teens and young adults with congenital heart disease to their Heart fund balls every year. Now, I am not so sure. Lancelot and I live in a small town, so I thought that is why we never never heard from the AHA throughout his life. Since there was nothing medically that could be done for my son, I thought that may have been the reason too. (He is 19.) Maybe if some of the money they raised had been was used for Congenital vascular and Heart disease, Someone may have been able to help Lancelot and countless others.

  6. THERE SHOULD BE A STAND AGAINST AHA! WE SHOULD STOP DONATING TO THEM, JUMP ROPE AND GOING RED UNTIL THEY DO WHAT IS RIGHT….. LETTING US DECIDE WHERE OUR DONATIONS GO! WE DONATE OUR MONEY TO THESE PEOPLE SO SOMEONE ELSE CAN DECIDE TO DO OTHER THINGS WITH IT….. NOT MY MONEY ANY MORE!!!! NOT DONATING UNTIL AHA PUBLICLY STATES THEY ARE CHANGING WHAT THEY DO WITH MY MONEY, HOW THEY OPERATE AND TREAT OUR KIDS AT THE EVENTS USED TO RAISE MONEY!!!

  7. Good for you. Speak your mind. I too, am a heart mom and I think its absolutely ridiculous how the AHA treats CHD. So very sad… Just think of all the good & advocacy that COULD and SHOULD come out of the AHA. I agree, people w/ defects of all ages are important… but when your kids are being used is where I draw the line. =( Disapointed!

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