Friday, February 11, 2011

Make a Difference

This is the last post I have in me for Congenital Heart Defects Awareness Week.  This week is hard on me for a multitude of reasons. I have to think back and remember the worst days of Keegan's life thus far.  I have to think of all the children (and adults) I know walking around this earth with broken hearts.  I think far too much about the multitude of CHD angels who left us too soon. 

But most of all, it hammers home even harder the fact that for Keegan and so many others, this battle...the war against their own never over.  The threat is never gone.  Whether your heart is "fixed", and you're waiting on the next repair, the next surgery.  Or you have a "new" heart, substiuting one disease for another, and you wait, every day, to see if this is the day your body decides to reject that beautiful heart or that it's too weak to fight the next infection. 

Try as we might, we will never be able to make heart defects a thing of the past.  It's unfortunately not something we can cure. 

But we can make strides to make parents teaching them to ask questions at their unborn baby's sonograms and demand they have one.

We can make hospitals more efficient in implementing mandatory pulse oximetry screening on all newborns before discharge.  If a baby is born at home or a birthing center, it should be done at the first well-child pediatrician visit. Write your legislator or local hospital. 

We can spread telling our stories as many times as we can.  I know I was oblivious to the world of heart defects before it happened to me.  It doesn't have to be that way.  By spreading the word, others will know what to look for and to ask questions or seek medical advice if their baby struggles to eat or breathe, seems "blue" or tired. 

We can save registering to be organ and tissue donors.  18 people will die each day in America waiting on an organ.  Register yourself with your state's official donor registry by visiting

And we can learn funding research for congenital heart defects.  So much has changed in even the last 10 years...treatment options, surgical techniques, artificial valves, tissue grown from your own cells.  We now have adults living with CHDs, and a whole new world of research awaits to determine how best to help treat and support them.  There are countless ways to fund CHD research.  I don't have a "favorite" foundation to recommend to you, but a simple internet search will yield a multitude of results.  As it stands, I am more apt to support transplant resources myself and haven't done enough research to endorse a single source.  Every bit counts though; even and especially donations to pediatric research hospitals, such as Children's Medical Center in Dallas and Children's Hospital of Boston.  Obviously both are very dear to our hearts.  Each year, congenital heart defects kill more than children than all forms of pediatric cancer combined.  While there is certainly not enough federal funds dedicated to pediatric cancer, there is even less available for CHD research.  Even the American Heart Association only puts about one penny of every dollar donated to CHD research.  The need is great....give where you can if you feel called to do so.

While this week may have been a diversion of sorts from the general purpose of this journal in tracking Keegan's journey specifically, I appreciate your support and attention to this matter.  If we touched or educated even one more person, it is always, always worth it.  Thanks again.

1 comment:

Jennifer said...

Maddie, almost 39 years ago my cousin was born with tetralogy of fallot. She is a survivor! Growing up I knew her as my cousin who had heart surgery when she was very little. Other than that, she was like every other cousin, except she had a cool scar. I had no idea the magnitude of all she went through. It wasn't until I witnessed your journey that I completely grasped it. She has two beautiful children - which is completely amazing to me. She was also told after her second she was not allowed to have any more babies - it's too hard on her heart. But guess what? She just published a book!!!! You are doing great things by raising awareness about CHD. If there is anything I can ever do to help you, please let me know!!!! Thank you, thank you, thank you for allowing me to witness your journey through all of this. I am truly honored. Your family is in my prayers daily!!