Bodie’s Story: A Warrior at Heart

Our son, Bodie, was born in February 2010 with Hypoplastic Left Heart Syndrome, one of the most complex heart conditions to treat. We found out about Bodie’s heart condition when I was 17 weeks pregnant. We are exceptionally lucky to be living in Los Angeles, near Children’s Hospital Los Angeles, one of the nation’s top centers for treating this condition, which involved a surgical team headed by the incomparable Dr. Vaughn Starnes. We knew we were in for a bumpy ride. For us, there was no question that Children’s Hospital Los Angeles would be the surgical center to take us on that ride.

Bodie had his first (planned) open heart surgery at five days old, a second (unplanned and emergent) shunt revision and pacemaker placement at two months old, and a third (planned) open heart surgery at seven months old. Between all three of the surgeries and several setbacks and infections, including one in his bloodstream, he spent almost all of his first five months inside the walls of Children’s Hospital Los Angeles. It was a difficult time for our family. But we are so grateful for the surgical expertise of Dr. Starnes and his team and the compassionate care provided by the entire cardiac and electrophysiology units.

The amazing thing about Children’s Hospital Los Angeles is that it’s not just the patient that is treated; it’s the entire family. The parents are allowed and encouraged to be a part of their child’s care team. I always felt like my questions were respected, and my opinions were not just valued, but sought out. With medically fragile children, it is often said that no one knows them better than the parent. This is never truer than with cardiac kids and the team at Children’s Hospital Los Angeles that takes it to heart. The relationship between parent and provider was symbiotic and truly, I believe, the reason my son is alive today.

Despite his incredibly rough start, Bodie has completely defied the odds and is now doing amazingly well. He looks and acts just like any other 2 ½ year old boy, running around (we say he is in a perpetual state of motion) and talking a blue streak you would never know what he has been through. We have a fourth open heart surgery on the horizon, but we take comfort in knowing that Bodie will once again be in the gifted hands of Dr. Starnes and the (Cardiothoracic Intensive Care Unit) CTICU staff at Children’s Hospital Los Angeles. Bodie continues to inspire us and we are grateful every day that God chose to bless us with Bodie, and led us to Children’s Hospital Los Angeles for his care.

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Filed under: Celebrating the Heart, Parent or Guardian Story, Share Your Story on September 6th, 2012