Finding out that we were having a boy was simultaneously the happiest and scariest day of my life. It was the day I learned we needed to choose one of three options. One, to plan on putting our newborn on the heart transplant list. Two, to anticipate 3 open heart surgeries over the the first few years of his life. Or three, to let nature take its course. Our son Jack was born December 17th, 2005 with Hypoplastic Left Heart syndrome. He flat-lined at 2 hours old and was intubated for the next 25 days.
Jack had his first open heart surgery at ten days old. It went well, he stayed sedated to heal and we were released from the hospital on the lucky day of Friday, January 13th, 2006. Jack went home with oxygen and a feeding tube but eventually became tube-free.
His second surgery was when he was 9 months old. This open heart surgery was not necessarily as complex as the first but what heart surgery isn’t complex…. He recovered miraculously fast and was home within 5 days of surgery, off O2. He spent the next few years enjoying life and finding ways to have fun at all hours of the day.
Jack didn’t weigh enough by the time his third surgery was due, so it was post-poned until he was three and a half years old. This time was different. He was much more aware of what was going on and could speak and communicate his ailments. Sending him into the O.R. had never been harder. He did well- it was the LONGEST surgery yet, due to excessive scar tissue. He came out looking wonderful and pink. However, due to his small body and all the agitation he endured during surgery, they cavity between his chest and lungs kept filling up with fluid. (This is called a Pleural Effusion.) At one point, so much had filled up his chest that one pleural effusion was the size of a 2 liter bottle of soda, in a 25 pound boy.
(The blue circle shows his right lung fully inflated. The white all around it is fluid. The left image is AFTER they put the chest tube in to drain the fluid.)
We were at Primary Children’s Hospital from April 2009 till July 2009 battling these effusions. We tried fat free diets, dropping his weight down to 16lbs. We tried medicine. He had blood draws every day where I would have to wake him up only to extend one of his limbs out to a person with a needle. He had x-rays each morning at 5:30AM where after painfully being transferred to a wheelchair he would have to lift his arms for the radiologist, even though there was a chest tube pierced through his side. He some how maintained and often times was found smiling in his hospital bed. To this day he is my hero for getting our family through those debilitating months.
After two more surgeries to correct the cause of these persistent effusions, he was finally allowed to go home. Since then, he has been energetic, active, happy, and grateful for every minute.