Wednesday, February 9, 2011

Why am I fired up about CHD Awareness?

I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one)

Here's why...

I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research?

I cry out for CHD research because my son will never be healed. He will always have a CHD. His BEST case scenario is at least 1 more open heart surgery and pacemaker maintenance for the rest of his life. He will always either have a half a functioning heart (the half that was never intended to pump blood to the body, by the way) that's been rewired to work as a whole heart the best it can. Or he'll have someone else's heart beating inside his body. At the moment, those are our only options. If and when the day comes that he needs a transplant, it will bring a whole host of issues, including forever worrying about rejection and the possibility of future transplants down the road. He will always have exercise limitations of some sort. The extent of those limitations will be up to his heart, his lungs and his body, but at the very least, we know that he likely won't be permitted to play contact sports.

I cry out for CHD research because, when my son is a teenager (God willing, he will live that long), instead of assuming he will live forever like most teens do, he'll have to face his own mortality at the same time as he's growing into an adult. How do you do that? I don't know. The oldest people with his condition are in their twenties and there's only a handful of them. Dusk and I struggle with how we'll help Bodie at that point - we know what it's like to raise a child with a "questionable" life expectancy, but we can't know what it's like to be the one actually living with that questionable life expectancy. How do you find a spouse who loves you in spite of a questionable future? Of course, no one is guaranteed a specific future, but it's just human nature to take our best odds, right? Don't get me wrong: we will do EVERYTHING in our power to raise our son to live a normal life, and we have every reason to believe he will fall on the favorable side of these odds, that he'll lead a happy, normal life. We will teach him about God's plan for him, and encourage Bodie to use his journey how he feels called to use it. And so I shove these worries to the back of my mind...but the realities are still there.

I cry out for CHD research because it's not just about MY son. Truly, Bodie is doing incredible right now. But far too many babies are lost every year to CHD's. CHD's are the #1 birth defect and the #1 cause of infant death before the age of 1. 4,000 babies will not live to see their 1st birthday from CHD's alone this year. CHD's can happen to anyone. Yes, we have a history of heart issues on Dusk's side of the family. But the fact is, I have met more families affected by CHD's with absolutely no cardiac family history than I have met with a cardiac family history. Cardiac babies can be born to healthy parents. Parents who have NO inkling what a CHD even is.

I cry out for CHD research because, like so many CHD's, no one knows what causes HLHS. How the heck are they supposed to figure out how best to treat it if they can't even figure out what causes it? I see so much money going to pediatric cancer research, and cancer is horrible, don't get me wrong (my mom is a breast and kidney cancer survivor, so believe me, I am all about cancer research as well), but CHD's kill almost twice as many babies every year as all pediatric cancers combined, yet pediatric cancer gets 5x the funding of CHD's? What the what??? It doesn't make any sense.

Most of all, I cry out for CHD research, because treatment for CHD's has come SO FAR in the past 20 years. Praise God that my son was born in 2010, not 1980 or 1970. But in 2010. A time when we can now say 75% of kids with his defect make it to the age of 5. He is truly on the cutting edge of medical technology. And I am so grateful for that. But I am greedy. I'm his mother. He's my son. I want more for him. I want the statistic to be 100%. I want to rest in the blessed assurance of knowing my son has a really great chance of making it to adulthood and living a normal life. And the more money that goes to CHD research, the greater chance we have of that happening.

So why am I so fired up about CHD awareness? I can't help it. It's in my blood now. I hope maybe it'll be in yours a little bit, too - and you'll be inspired to make a donation to the Children's Heart Foundation, one of the few organizations that gives a substantial amount of money to CHD research!


  1. Love it! I could have written that exact post! Thanks for sharing your heart Amy, and thanks for being fired up for CHD research!!

  2. Great post! You took the words from a lot of our mouths! I struggle a lot of when Colin gets older, how will he deal with an unknown future. How will be deal with? It's easy right now because Colin is doing well, but how will life be if he doesn't do well.

    Let's all get fired up!

  3. So well said, Amy. It's important to recite the facts and statistics--it's a part of the life of a heart child and his/her family. Adding your little sweet guy to my prayers.

  4. What a wonderful, and heartfelt post this was Amy, I know the passion from where it came. My grandson Jake is fighting the same fight as Bodie and his future is depending on RESEARCH. Thanks for inspiring and educating others on OUR cause to help save these precious kids <3

  5. WONDERFULLY STATED!! <3 Thank you AMY!!

  6. I love this post! Very well stated, and oh so true. My husband is a CHD survivor (TGA) but is now waiting for a heart transplant because his heart is rigged to work backwards, and his heart is just tired and ready to quit. Technology has come so far since he was born, but there is still a long way to go.

  7. Beautiful post..And I must say no one in there right mind is asking why you continue the fight..You are an amazing mommy and your little fighter is amazing right there with you.

  8. Beautifully said Amy! Through your blog I have learned a lot about CHD and I try to share what I have learned with others. Thank you for sharing your story!

  9. Excellent post! Thank you for getting fired up for our babies.
    Veronica, mom of 4m John, Hypoplastic Right heart, TGA, VSD, ASD, Hypoplastic Aorta, Goldenhar Syndrome