Thursday, June 9, 2011

The Story of Brayden's Heart

(Reposting with a quick edit below in bold and red...oops)

The day my nephew was born is etched into my brain as one of those days that I'll remember forever.  The joy of watching my brother become a Dad, seeing the love on my parent's faces as they became grandparents (again) and getting to hold that precious little boy moments after his birth.  And then, in a split second, the news that would change us all forever -- his diagnosis of Aortic Valve Stenosis (AVS), a congenital heart disease. 

I've been quiet on the subject, as my brother and his amazing wife dealt with and processed all the ups and downs of this past year.  And, to be honest, from the first moments we learned of Brayden's condition, I've yet to be able to find the right words to help, comfort, sooth, encourage and, most of all, express my love. 

Why share now? 

In hind site, it doesn't surprise me.  My family has always been amazing and never ones to rest on their laurels.  My parents were never the sit-idly-by kind of people and from the first moment of Brayden's diagnosis a plan was set in action to help their beloved grandchild and his parents and the legions of other parents dealing with the same psychological, financial and medical issues that come with a similar diagnosis. 

And so out of endless love, devotion and a overwhelming calling to help our Brayden and other families in similar situations, was born my family's registered 501(c)(3) foundation -- A Giving Heart Foundation:  Big Hearts Helping Little Hearts Grow.  I do hope you'll visit the site and if you feel so obliged, make a donation to this amazing and personal cause -- 100 percent of your donation reaches children in need.

My beautiful, strong, the-kind-of-Mom-we-all-want-to-be, SIL wrote Brayden's touching story for the foundation's Web site and I wanted to share it with you:

"Like many parents, we weren’t prepared for the day Brayden was born. We’d chosen that weekend to move and, generally speaking, I don’t think any first time parent is prepared until they are holding their beautiful baby in their arms. It’s like a switch flips and you want nothing more than to protect and love them. The amount of love that instantly grows is immeasurable; we were on cloud nine. So when the pediatrician stopped by for a routine visit, we didn’t think much of it. All of the tests done while I was pregnant came back perfect, why would anything change now?  And then she told us that Brayden had Aortic Valve Stenosis (AVS). In an instant, it felt like all of the air had been sucked out of the room. 

The next month, we were living under water.  Shuttling our innocent little bundle to doctors for echocardiograms, researching AVS and trying to make sense of what was happening.  And then, the day before Brayden turned one month old, the decision was made that doctors would need to intervene and do a balloon procedure on Brayden’s tiny, baby heart. We were to report to the hospital the next day at 6 a.m.  This is when we met Dr. Hijazi. We weren’t scheduled to see him, but another doctor working at a different hospital.  But a family friend recommended Dr. Hijazi, claiming he was the best of the best.  After a quick online search, we were sold.  He is an expert in his field and his accolades endless.  My husband, called Dr. Hijazi’s office to explain our situation and Dr. Hijazi immediately called back. Though he was scheduled to leave town, and had never met Brayden, he agreed to meet with us.  He said that if he agreed the procedure needed to be done, he would stay and do it.  At the same time, I was speaking with our insurance agency.  Not only was Dr. Hijazi out of network but, our insurance agency had dropped Brayden from our plan that day due to a system glitch.  At the 11th hour, the glitch was corrected and we were told the costs would be a maximum of $5,000.  At this point, costs didn’t matter.  We would have sold our souls to make this procedure happen.

The morning at the medical center is a blur.  I was a mess; Mike was holding it together (one of us had to).  But once we spoke with Dr. Hijazi it somehow seemed a bit better. Mike was shocked at my lack of worry once we left Brayden in his capable hands.  In my mind, this guy was the cream of the crop.  And not only is he extremely talented, he is personable, understanding and, for some reason, I trusted him.  After three hours of pacing the floors, we met Dr. Hijazi in the hall and he smiled immediately.  I broke down in tears again, this time out of relief.  He said the procedure was extremely successful and Brayden was recovering well. It was like the weight of the world had been lifted from our shoulders.

Since the procedure, Brayden continues to grow strong and is living a normal life like any other kid.  He’s met or exceeded every milestone outlined for his age and has a great personality.  But, while Brayden’s heart is healthy, we still have fears for the future.  Brayden will need another balloon at some point, as well as open-heart surgery to replace his valve.  How will we explain this to him as he gets older, how do we push our fears aside and focus on our healthy little boy?  We were also left with a mountain of bills from our insurance company that far exceeded the original amount discussed.  Thankfully, Mike’s father made it his personal mission to negotiate those costs.  And Mike’s mom is a psychologist, which has been a huge help in calming our minds.

But not everyone is as lucky as we are.  Not everyone has a “simple” case like Brayden – though I see nothing simple about congenital heart disease.  Not everyone’s parents like to navigate the legal/insurance system, and not everyone’s parents are able to provide the emotional support that’s needed. 

And that’s why we’ve created this foundation.  Will it benefit my son when he needs to have his valve replaced - yes.  But, I’m hoping it will also help families like ours - those just starting out and not emotionally or financially prepared for the worst-case scenario.

I still spend a lot of sleepless nights asking myself what if, and that’s when Mike reminds me that we’re doing our best. And that’s all you can do."

You can also check us out on Facebook and please "Like" us, it would mean a lot to me!

From my heart to yours,

1 comment:

  1. Your family just sounds like it is exploding with amazing people. Easy to believe, knowing you. :)