CHD Awareness Week 2015


Yesterday was the first day of Congenital Heart Defect Awareness Week. Sarah’s journey dealing with her CHDs and subsequent heart transplant has affected so many more lives than just her own. This week we remember sweet angels and fighting survivors whose incredible hearts have touched all of ours….

I was just looking and I can’t believe it’s been three and a half years since we started this blog to chronicle Sarah’s transplant journey. It’s been that long since I was thrown into this heart world, meeting other heart moms and dads in the Intermountain area, and started to realized that it’s not a journey we’ve been on by ourselves. Many have walked this path before us, and still more are following behind us. There are so many people affected by congenital heart defects in this world. I bet besides Sarah, you know at least one other person who has had heart surgery of one kind or another. If you don’t, I bet you know someone who does. I am also willing to bet that if they’re under 30, it was most likely a CHD that needed repair.

In an effort to support the little people who struggle to stay alive, and the families of those whose tiny hearts just couldn’t work any harder, I offer my love, prayers and a gentle push for CHD Awareness. Here are a few CHD Facts you might not know…. (courtesy of Intermountain Healing Hearts)

  • Nearly one of every 100 babies is born with a CHD. Congenital heart defects are the #1 birth defect in the world.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
  • Surgery does not cure CHD. Many children will require additional surgeries and lifelong maintenance to sustain their heart health.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • In the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

As hard as some of these facts are to read, I know that most of us wouldn’t trade the paths we’ve traveled for anything. These special children come into our lives and are immediately a source of light, a reason for hope, and a strength to many. They make us who we are. Talk to someone you know who is affected by CHD, ask if you have questions, and pray for healing and hope for the families whose “babies” are struggling right now.

If you’d like to do more,¬†Intermountain Healing Hearts is having a social media campaign this week called Heart on Your Sleeve we’d love for you to participate in. They also accept donations for research funding at this same link.