Walking for Josh
October 20, 2003 had all the makings of a perfect day. Scott and Jennifer Crain welcomed their first son, Josh, into the world and were on cloud nine. Calls were made to friends and family to share the news, and Lauren and Emily learned they were officially big sisters. The euphoria of finally meeting their baby boy would be short-lived, though. Hours after Josh’s arrival doctors would make a devastating discovery.
The parents soon learned their son was born with hypo-plastic left heart syndrome dextra-cardia, which meant the left side of Josh’s heart was severely underdeveloped. The condition had gone undiagnosed throughout Jennifer’s pregnancy.
At just four days old, Josh had his first open heart surgery. “The days that followed were the kind that no parent should have to endure,” Scott said. Josh went into pulmonary hypertension and had to be paralyzed and placed on dialysis.
Over the next few days Josh’s condition seemed to be improving and the decision was made to pull out the heart line. When the line was removed, a blood clot on the end of the line dislodged.
“Josh was no longer getting oxygenated blood throughout his body and his life was in grave danger,” Scott said. For the second time in Josh’s 12-day life, his chest was opened up for another surgery. The tube was undone, unclogged and reconnected.
Scott and Jennifer looked over their fragile newborn son following his second surgery. “It was hard to make out his little face behind all of those tubes and cables,” Scott said.
At seven months old Josh had his third open heart surgery, the surgery that allowed him to live a seemingly normal life for the next few years. “Although he was small for his age, tired easily and had to be carried around everywhere, Josh’s spirit never wavered,” Scott said.
While Josh’s condition had always been a challenge, things became even more difficult when he was a bit older and could understand what was going on. “Why is this happening, daddy?” Josh would ask. “Please don’t let them hurt me.” At five years old, Josh underwent yet another surgery.
Josh, Scott and the rest of the family have been involved with the American Heart Association’s Houston Heart Walk for the last 13 years to raise awareness of heart diseases. “Through funding and research attributed to the American Heart Association, families like mine are given hope,” Scott said.
Josh is now thirteen and enjoying a typical teenage life. Due to his heart condition, he cannot participate in most sports and must take various precautions, but that does not stop him from being the adventurous boy that he is. Though Josh will likely require additional procedures in the future and maybe even a transplant, his family remains grateful and optimistic. “Josh is why we walk and he is why we support American Heart Association,” Scott said.
To learn more about how to get involved with American Heart Association and the Houston Heart Walk, please visit heart.org/hgcevents.