Monday, February 9, 2009

We "Heart" CHD Awareness

This week we'll all be thinking about our hearts--our sweethearts, our dear hearts, those with big hearts who will leave us feeling all kinds of fluttery with warm Valentine wishes. May I ask that you remember some of the littlest hearts this week, too?

February 7-14 is Congenital Heart Defect (CHD) Awareness Week. And although, CHD is the most frequently occurring birth defect and the leading cause of birth-defect related deaths it receives little to no funding for research, prevention or awareness. It's time for that to change. Here are some facts about CHD that may interest you:
  • Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

  • It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

  • Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, less fatal CHDs are not detected until adolescence or adulthood.

  • Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

  • In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

  • Only about 30% of the children who need a heart transplant receive one in time.

  • About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

  • Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease. It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year.

It's time to talk about Congenital Heart Defects. Excuse my soapbox, but it's time to give families more advice than to consider termination. These kids are worth saving! It's time to raise awareness and start to look for the reasons CHD is becoming shockingly more common.

What can you do? Support research. Be an organ donor. Give blood. Donate platelets. During his last surgery McKay was forced to use platelets that weren't a perfect match because the blood bank had no other options for him. That meant McKay had to receive even more meds to prevent long term complications. These kids have enough stacked against them already. If you can, please give blood. Do it for the cookies. Do it for the free OJ. Do it for McKay!
P.S. Please say prayers for little Gracie who will have her Glenn operation this week. It's about time this fighter had an easy round or two...


Jenny said...

Wow! That's a lot to think about. No one better than you to remind us of how important this is. I have also been the grateful recipient of someone else's blood. It may have been the difference between life and death. Thanks for giving us something to think about and a call to act.

Susan May said...

My son Nick was born with CHD 20 years ago. He had three heart surgeries and received a heart transplant before he turned two. Today he is attending college. Thanks for blogging about this important issue. It was very lonely when we started Nick's journey.

Susan May
"Nick's New Heart"

Michele said...

Well said. I even learned some things I didn't know. Very informative. Thanks for the prayer plug for Gracie. I'm sorry that we will miss seeing you today!! I need to get your email address, I thought I had it. Hope to see you soon!

wylie said...

Thank you Mindi for such a deep, thought provoking reminder of how we can help. I'm sure none of us mind you getting on your "soap box"--we all feel so strongly about McKay and any more information you give us about how we can help him and other sweet babies is wonderful.