Putting the “heart mama” hat on for a bit…

A few nights ago, as The Sound of Music was being watched live around the country, my Facebook newsfeed was extremely busy. There were the positive and negative comments about Carrie Underwood and cast. And then there were other comments about a commercial… a St. Jude’s commercial to be more specific. No doubt, these are always moving commercials with a combination of celebrities and children who are in various stages of chemotherapy. But this particular commercial lit up a closed group of heart mamas that night for a more specific reason; Shaun White, the famous olympic snow-boarder, was among the celebrities.

This isn’t his first time supporting St. Jude, and I don’t in any way begrudge him his charity there. But what is extremely hard for many of us is that Shaun White is man with a congenital heart defect. He survived open-heart surgery as a child and he is clearly thriving in spite of living with a serious heart condition. Shaun White has been asked on many occasions to speak on behalf of research for CHDs. He has refused every time. He doesn’t want to be defined by his CHD (totally understandable! I don’t want Charlotte to be defined by hers, either). And yet it is mind-boggling to me that he would lend his celebrity to help some sick children, but not others to whom he has a direct tie.

And before I start getting nasty comments, please know that I am not saying this because I think it should be either/or. I know families who have children with cancer, and who have lost children to cancer. A sick child is a sick child, and while there may be varying degrees of suffering, it all sucks. Plain and simple. I guess what many of us in the CHD community don’t understand is why it can’t be both/and. Congenital heart defects kill more children each year than all the childhood cancers combined, and yet CHDs get a paltry amount of funding for research. Pediatric cancer, on the other hand, gets tons of funding (which is great) and as a result of that funding and places like St. Jude’s, the mortality rates of pediatric cancers has declined by more than 50% in the last decade (according to the National Cancer Institute). That is great news, and that is what happens when there is funding and research.

Part of this is our fault… we don’t have a cohesive organization* like Susan G. Komen (in terms of name recognition) or a hospital dedicated to the research and treatment of congenital heart defects. There is no place where heart parents can take their children for free care and treatment. (Charlotte’s first hospital stay cost more than our first two houses combined, and she was only there for three weeks. We know of families who spend months at a time in the confines of the CICU. We will be forever thankful for excellent health insurance.) There are organizations around for children with heart defects, but they are mostly small and disconnected and many are just geography-specific.

Why am I sharing all of this? Just to complain? No… I think it’s my way of raising awareness. Or maybe I just had too much time to think about it this morning after reading a letter another mom wrote to Shaun White.

I’m sharing this letter because it gives a little insight into the life of a heart parent, especially this time of year when we are being asked to give to St. Jude’s at nearly every turn.  I don’t agree with everything she says (especially about St. Jude’s in particular), but I do completely understand her frustration.

This line in particular nailed it for me: I know how horrible cancer is and have known my whole life.  I didn’t know a thing about CHD until I was offered to terminate my baby before he was born or put him in a hospice the morning after his birth.  I had no idea the fight I faced, and neither does most of America.

I don’t know that I publicly shared that particular part about our journey with Charlotte, that we were given the option to “terminate” her at 18 weeks gestation. I was informed that I only had two weeks to decide. I don’t know the data on how many parents choose this option, but I do know that they are higher than we would probably care to think about.

I think that’s another reason why CHds aren’t as well-known… childhood cancer strikes children who have been living typically normal, healthy lives. They are children and grandchildren, classmates and friends (not always, I know; babies can get cancer, too). CHDs show up in newborns, and many, like Charlotte, get through the more “dramatic” stages of treatment before they start preschool. If you were just meeting Charlotte for the first time today, you would have no idea that she has ever been sick a day in her life. Her little constellation of scars is hidden by clothes. You couldn’t possibly know that she is being kept alive by a tiny piece of Gore-Tex and plumbing technology to rival the ancient Roman aqueducts.

Again, this isn’t about elevating a childhood birth defect over a childhood disease. They are both horrible (as are the myriad other childhood birth defects and illnesses I haven’t even mentioned). This is me using my little space on the internet to share my thoughts on a topic close to our family. And maybe I’m hoping the next time you see Shaun White on a St. Jude’s commercial or on a pack of gum, you’ll think about kids with CHDs, too.

*Some of you may be thinking, “what about the American Heart Association?” What, indeed. The AHA has different chapters across the country, and while they have some discretion over how funds are spent, in general they spend less than one penny per dollar raised on research, treatment and support for CHDs. The vast majority of their funds go to dealing with adult-onset heart disease. So if you give money and time to the AHA, continue to do so; they do a lot of great work. But please don’t do so because you think that your donation is helping children like Charlotte.  If you are interested in helping, the best place is The Children’s Heart Foundation.