Tuesday, February 7, 2012

A brief message about broken hearts

Interrupting my hiatus for a public service announcement!

Today through Feb. 14, it's CHD Awareness week. My son, Luke, has a CHD story, so I wanted to do my part and spread a little awareness. I hope you don't mind.

CHD stands for congenital heart defect. It is a problem with your heart present at birth. They're the most common birth defect, effecting about 1 in 100 live births. There are 35 known CHDs, and sometimes kids are born with two or three or four. Luke had three -- a ventricular septal defect, an atrial septal defect and coarctation of the aorta. The first two -- the septal defects -- are a fancy way of saying a hole in the ways of the heart chambers. They're the most common type of defect, and sometimes they close on their own. Others need surgery to fix. Luke also had the "coarc," which means his aorta, the part of the heart that feeds blood to the left and bottom half of your body, was kinked like a big garden hose. Depending on the severity, this can require open-heart surgery or a cath procedure to fix.

Luke at about four days old, in the NICU before his surgery.
Luke needed open heart surgery, and he had his when he was 6-days-old. We have a fantastic pediatric heart hospital near us, routinely ranked in the top three in the country. So everything for Luke went just splendid. He was in the hospital for 14 days and by his 1-month birthday, you would never know what he went through. To this day, he's an active, healthy, completely "healthy-hearted" little boy. His CHD is really not a part of our day-to-day lives, and I'm so blessed to say that. I really don't want to make a big deal about it -- his scar down his chest is not his identity. But he did go through some tough times, and I do want to honor that.

Me holding Luke for the first time in five days. He was 6-days-old and about to go into open-heart surgery at C.S. Mott Children's Hospital in Ann Arbor.

Luke following his surgery.
Luke at one-month-old, home and healthy!
 Another reason I want to post this, is that lots of kids with more severe CHDs have it way worse than Luke. Some CHDs require multiple surgeries and result in many complications and side effects. Kids don't eat, they don't grow, they turn blue, they get tired, they have stomach issues, they need heart transplants, etc. And the sad reality is that some kids die. CHDs kill more children each year than all forms of pediatric cancer combined. Isn't that an astonishing fact? And while cancer is terrible, just terrible -- I would be so much more frightened if my child had cancer -- heart issues are no picnic either, and they deserve a little more awareness than they have. Most people seem to have never heard of CHDs, or no little about them. I know that was me before Luke was born.
Lastly, if your child is at the beginning of a CHD journey, perhaps still in growing inside you, please have hope. CHDs are far from a death sentence. My Luke is a great example of that. There are a lot of amazing surgeons out there doing amazing things every single day. Take a look at this Pinterest board: The Faces of CHD. You'll see a lot of stories that involve scary times, and yes, some children don't make it. But the majority of the stories you'll see kids who wind up being described as energetic, healthy, happy, and "normal." There's hope. 


  1. What a great public service announcement! I run into so many families starting their heart journey who don't have anyone to talk to that has such a positive outcome. While I try to help them, my outlook is certainly not typical for most CHDs. Happy Heart Week! And I hope you are not too overwhelmed with the new schedule.

  2. Thanks and thanks. And MOL, we're definitely at different ends of the CHD spectrum. I wish so much you could be here with me.

  3. I had no idea about the CHD stats. Astonishing. Great post, Krista.