Thursday, February 10, 2011

Congenital Heart Defect Awareness Week

I've been having trouble updating my blog.  Not technical trouble, but emotional trouble.  I am grateful to have my son in my life and I'm heartbroken for the thousands upon thousands of mothers who cannot say the same.  I've stood by and watched as more than a dozen children were lost in a matter of weeks.  I cried with their mothers from miles away.  I feel guilty that I still have my son.  I worry that I hurt them when I talk about my gratitude for his continued existence.  

I continue to read their blogs, pray for them and bear witness to their sorrow.  I've been asked if I'm punishing myself.  No, I'm not.  What I am doing is working to ensure I do not bury my head back in the sand.  Intellectually, I know that my story is important, but emotionally I can't help but think I should keep silent.  I have my son and I worry that talking about that fact will hurt people who have been very dear to me.  Those people are going through tragedy like I cannot begin to imagine.

This is National Heart Month.  This week is specifically Congenital Heart Defect Awareness week.  I was born with a congenital heart defect and I wasn't aware of how common such defects are and how deeply they affect those who care for these children.  I think it's hard for our children; they either don't remember how it affected them or are living with a palliative repair that is their normal.  Shawn White is a Tetrology of Fallot (TOF) survivor, yet he speaks out for cancer causes.  He doesn't remember having TOF, he doesn't even think about it except when he's on the way to his cardiologist.  That's what we want for every single one of these kids, and yet, we need them to remember and to speak out.  Because people aren't aware of these vicious horrible defects that break hearts and destroy lives.  I read an article on pediatric open heart surgery the other day and one quote really stuck with me.

"As far as treatments go, heart surgery represents the nuclear option, a bold final effort to save a life by bringing it to the brink of death". (

We risk our children's lives in the hopes that we can have years with them rather than a few precious months.  Sometimes we win and sometimes we lose.  But the fact that we have to take the risk at all is a national tragedy.  The fact that there are parents and children all over the world who don't have the opportunity to take that risk is a worldwide calamity.  

I'm humbled when I look at my son.  I'm grateful he survived and is now enjoying life, able to eat and play with a strength he's never known.  My son was in heart failure from the time he was 4 days old.  I fully appreciate how lucky I am to have him in my life, whole and healthy.  When we go to the cardiologist tomorrow I will marvel at the 4 chambered heart on his echocardiogram.  I will delight in watching him breath easily and smile and laugh.  But I will also remember there are mothers all over the world who don't have that privilege.  That breaks my heart.


  1. Christine- You don't need to feel guilty for talking about Charlie. Yes, he lived and Joshua died, however, that is just how it is. We ("infant loss survivors") can't expect others to not talk about their children because ours aren't here. Something that we have to accept and live with is that life DOES in fact move on- people continue having babies, babies our children's ages meet milestones, etc.

    You don't need to feel guilty. Not one bit...

    This was a beautiful post. Much love to you. Kiss charlie for me! :o)

  2. It still makes me so mad that they won't go to camp together. I never got to meet Joshua and I still miss him :(