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. 

A few sweet things

My super talented and sweet friend Jen gave me a belated birthday present this week -- this adorable pin cushion! Ain't it dandy? It's the perfect small size, and such cute colors. They remind me of her. And I love how you can prop it upright since it's made out of a frame.

She said she found a tutorial for making these somewhere but can't remember where. Thank you to whoever that genius is! If you'd like to make your own, it's simply a matter of painting a cute frame a sweet color, wrapping a piece of sweet fabric around a piece of cardboard, filling it with batting and then smooshing it through the frame, with the glass acting as the holder-inner. (That's a word, right?) Make sense?

She also made Luke these...

 

 ... fabric letters! So sweet. I will soon be making a similar one for Jack. The question is whether to spell out "Jack" or "J.J"  I don't even know what I call my own kid! 

Thanks for all the sweetness, Jen!

And one more thanks. A very, very sweet one indeed. 

The quiet, sweet moments before I handed Luke over for his open-heart surgery, three years ago.

 Thanks to all the doctors, nurses, cardiologists and countless others, and most of all to our fabulous surgeon, Dr. Ohye, who three years ago this Sunday ensured my baby would live. On July 24, 2008, Luke had a  open-heart surgery to fix three heart defects -- . coarctation of the aorta, ventricular septal defect and an atrial septal defect. Modern medicine is amazing. A few decades ago, he would have surely died from those heart issues, likely in infancy. It i s so hard to fathom. Thanks to advancements in pediatric cardiac surgery, he now has as good a chance at a long, healthy life as anyone. That day was the toughest day of my life, and also a day I'm so very grateful for. I'll be thinking about it tomorrow. And about the kids who aren't as lucky as Luke, those who have congenital heart defects that require multiple surgeries or lifelong health struggles. For the parents who weren't as lucky as me, and who have lost their babies. CHDs kill more kids each year than all childhood cancers combined. Isn't that astonishing? And sad? I think so. 

So, tomorrow will be a sweet day, remembering how lucky we are. We really truly are so so lucky.