While that first week was finally over, and Keegan’s broken heart was replaced with a perfect one, the battle for his life was truly just beginning.  If you have followed Keegan’s journey over the last five years, you know that his story is much, much more complicated than his complex congenital heart defect.

I’m somehow amazed every year how much this week of remembrance and advocacy takes a toll on me.  Obviously, having to relive that first week is nearly as harrowing as the first time.  Then, I realize what a big job lies ahead of us in the world of congenital heart defects – research, surgical advances, early detection advocacy, and more.  I remember all the friends we have made on this road.  More importantly, I remember the ones we have lost.  And it’s overwhelming.

But we will continue to tell Keegan’s story.  We will continue to share the importance of screening for heart defects before birth in order for parents to be able to research options, create a plan, and prepare emotionally.  We will continue to advocate for pulse oximetry testing for all babies immediately after birth in order to give children with undiagnosed defects a fighting chance.  We will continue to remember the angels who have gone before us bravely fighting a war against their own hearts.  And we will be grateful for every day we have together with our own heart warrior.

Our worst fears became reality on day 6 of Keegan’s life.  An echo done prior to an attempted wean of ECMO support showed that a hematoma on the ventrical septal wall of his heart had bled out.  The only way Keegan could survive was if he received a heart transplant.  At his age and size, the odds were nearly insurmountable against him.  I will never forget the feeling of my heart stopping as Dr. G explained it all to us.  She tried to instill as much hope as possible in us, but we could tell she didn’t have much to give.  I think today’s picture says how we all felt on day six.  The grief was overwhelming.  We were not and could not have prepared for this.  We resolved to surround Keegan with happiness no matter what happened, while we clung to any sliver of hope we could find.

On day 5, we finally started to see Keegan move his little hands and feet and were waiting anxiously for his eyes to open.  Our biggest concerns were his kidneys, his lungs, and his brain.  Keegan was officially listed as a status 1A on the transplant waiting list, although at the time we hoped it was precautionary.  If his kidneys did not recover, his lungs continued to leak, or his brain continued to bleed, that last hope of transplant would be gone.  The waiting seemed endless.  Like we were lost in a time warp with days and nights that bled into each other.  Our previous lives seemed so far away, and our future completely uncertain.  I remember sitting on the hospital bridge overlooking the freeway with my dad early that morning, watching the cars sped by on their way to start another day.  I realized for the first time that a congenital heart defect had changed my life forever.  No matter what happened from here on out, things would never ever be the same.

We were not and are not alone in that living nightmare.  For the families of one out of every 100 babies born this year, it will be their reality.  For some of those, the nightmare will never end; their child will lose the battle with a congenital heart defect.  We thank God for every day we wake with Keegan by our sides, and we pray for the comfort and healing of every parent who does not.

I think it is safe to say that Keegan had an extremely eventful first of week of life.  From birth to open heart surgery to ECMO to transplant in seven very short days.  This year for each day of CHD Awareness Week, I will share a picture from the Keegan’s corresponding day of life.  One week, one life, one angel, two hearts.

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 hearts…is 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 smarter….by teaching them to ask questions at their unborn baby’s sonograms and demand they have one.

We can make hospitals more efficient in detection….by 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 awareness…by 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 lives…by 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 http://donatelife.net/. 

And we can learn more…by 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.