My son's story -- Part 1

From a friend of a friend, a compelling story.

My son is sleeping right now...had a rough weekend - his blood pressure dropped, his blood count was decreasing, and he had chest and neck pain. The clinical team adjusted his meds, gave him a unit of blood, and are now trying to figure out what to do next. He is scared and worried and wants so desperately to be "normal" again. He is scheduled for leg surgery this afternoon and then we wait to see what the next steps will be.

While I have a few quiet moments, I thought I'd document the story of how he made it this far....it is a story of extraordinary luck and a fair amount of clinical heroism.

My son was born 17 years ago with transposition of the great arteries (his heart had over-rotated and was pumping in a way that didn't allow oxygenated blood to move from the lungs to the body and back again) so he had a 9 hour operation at a week old to reconstruct his heart. Luckily, we lived in a city where the Children's Hospital happened to have the pediatric cardiac surgeon who had trained with the surgeon who had developed the arterial switch, the new and better corrective surgery indicated for TGA. He obviously made it out of that surgery fine and he grew up to be an active, curious, intelligent, athletic, musically gifted young man. His older brothers cherished him but didn't coddle him....he was just one of three rambunctious, rollicking boys who all played sports and games with abandon.

He was cleared every year for athletics by pediatric cardiologists...the anatomy of his reconstructed heart was "unusual" and his EKG was abnormal but he had no activity restrictions. Once he got to high school, he ran cross country, dove, and played lacrosse. My only three sport athlete, to be honest.

Saturday, August 1st was the time trial for the cross country season....a chance for the boys to set their initial times for the year and to show the coaches their level of fitness. My son had trained hard this summer and had experienced a bit of a growth spurt, so he was pretty excited about posting a great time. He was laughing and joking during warm-ups. I stood in my typical spot, removed from other parents so I could watch him circle the open part of the course 3 times during the race. He looked over at me and gave me his million-watt smile and a thumbs up.

My son is not a top runner....in fact, he usually finishes in the bottom third of the team during races...but the team wins State nearly every year and the coach is a remarkable, inspirational man who had encouraged his older brothers to also run CC in the fall to stay in shape for their main sports, so my son had decided to join and stay with the team despite his poor finishes. That all meant that I would be one of the last parents on the course waiting for him to round the bend, run up the last hill, and then turn and sprint into the stadium and cross the finish line.

My son stayed with the middle of the pack for the first 2 laps but faded somewhere in the woods during the final lap....so he ran up and down the hill past me with only 2 runners behind him, neither of whom were in sight...so he was, in essence, running the last lap alone. I told him he was doing great and that he only had about a mile left, back thru the woods and out again. He was struggling, but he always struggled at this part of the race. I watched him run between the baseball field and the football stadium and into the woods along the creek for his final mile. I saw him run across the opening of the woods as he circled back to finish the race, but he disappeared into the trees and I waited for him to pop out the other side.

I noticed some commotion a moment later as some of the front runners who had already finished sprinted into the woods...then a few parents ran in...but I was on the other side on the hill so I focused my attention on the other side of the woods to see him emerge so I could cheer him as he sprinted into the stadium. Then I heard someone yell "Runner down!" and saw the trainers flying toward the woods in their golf cart. The odds were pretty high that my son could be the runner who had fallen - I figured he might have sprained his ankle or hurt his leg, so I started to run the 150 yards to the woods.

I reached the path and saw a group of runners kneeling in the dirt in a circle, praying, and a clump of adults hunched over a prone body on the path...I walked up and saw my youngest and most precious son lying in the mud, blue and not breathing, as the trainers and a parent and his coach worked on him...the trainers were hooking up the portable AED to his chest, with its strangely robotic voice telling them what to do with each step....the parent giving him chest compressions and directing everyone in a calm but authoritative tone....his coach on all fours over him, yelling in his distinctive voice that this was his race and all he needed to do was breathe no matter how hard it seemed for him - just finish the race and take a breath, over and over again.

I watched them try to revive him as I called his mother, who was working, to tell her he had collapsed....I narrated the action to her on the phone as they fired the AED, gave him CPR, yelled at him to breathe, and finally, finally watched him take a few deep, ragged breaths on his own. The parent found his pulse - it was weak but there, and he checked my son's pupils to make sure they were reactive...he was still unconscious but back with us.

The ambulance arrived, they got him on the stretcher and starting bagging him as his breathing had stopped again....they asked what hospital we wanted him to go to....the local children’s hospital where he received all his cardiac care or the closest hospital....I thought for a second and said "please just take him to the closest one".

I raced out of the woods and up the hill to my car so I could get to the hospital to meet his mom and prepare for whatever came next.

Continued below.