A Giving Heart: One Family’s Rush Experience

By Colleen Berk

Like many parents, my husband, Mike, and I weren’t prepared for the day our son, Brayden, was born. We’d chosen that weekend to move and, generally speaking, I don’t think any first-time parents are 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 after Brayden was born, 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: Brayden had aortic valve stenosis (AVS). In an instant, it felt like all of the air had been sucked out of the room.

For 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 for surgery the next day at 6 a.m.

This is when we met Ziyad Hijazi, MD, MPH, an interventional cardiologist at Rush. We were scheduled not to see him, but to see another doctor working at a different hospital. But when a family friend recommended Dr. Hijazi, claiming he was the best of the best, we did a quick online search and were sold. He is an internationally recognized expert in the repair of congenital heart defects and his accolades are endless. Mike called Dr. Hijazi’s office to explain our situation, and Dr. Hijazi immediately called back. Though Dr. Hijazi 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.

The morning of surgery is a bit of 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 and understanding; though we barely knew him, 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 procedure 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?

Still, not everyone is as lucky as we are. Not everyone has a “simple” case like Brayden’s (though I see nothing simple about congenital heart disease), not everyone has the financial means or insurance for this kind of care, and not everyone’s families are able to provide the emotional support that’s needed.  And that’s why we’ve created A Giving Heart Foundation.

The foundation addresses three vital areas of concern for those diagnosed with congenital heart disease. First, we’re helping fund Dr. Hijazi and his team in their groundbreaking research to continue the development of devices for nonsurgical repair of congenital heart anomalies. To date, they have successfully tested valve replacement through a cardiac catheterization procedure. Second, we’re providing funds for families who cannot afford the best medical care for their children. Lastly, we’re establishing a psychological support program for families who are faced with this challenging and often heartbreaking ordeal.

Will our foundation 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?” That’s when Mike reminds me that we’re doing our best. And that’s all you can do.

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