Mason's Story

September 2006*

Mason came home to us as a healthy happy baby on September 12, 2006. At one week of age he went into respiratory failure and went by ambulance to Kishwaukee Hospital and then was flown to Rockford Memorial. Neither hospital could figure out what was wrong with him so they decided to fly him to Hope in Oak Lawn. There, Dr. VanBergen diagnosed him with HLHS and told us we had three choices: heart transplant, three-stage repair or compassionate care. We decided the three-stage repair would be the best option for our little boy. At Hope we also discovered that Mason had had a stroke when he crashed, his left side was affected and the neurologist said it would mainly hit his left arm.

After a month of ups and downs Mason finally had his first surgery, the Norwood. It didn't go as smoothly as we would have liked and Mason's heart stopped beating for 23 minutes. Luckily the surgeons were right there and were able to open him up and manually beat his heart for him while they put him on ECMO. Because Mason was such a fighter he was able to battle through this set back and finally went home in early November. He came home to us on a feeding tube and needed tons of medicines. Looking back I don't know how we kept it all straight!

In January of 2007 he received his second surgery, the Glenn, and seemed to handle that one pretty well. He was in for another month and came home on oxygen and the feeding tube, not to mention the medicines! We were relieved at this point since we knew the next surgery would be a year and a half away. Unfortunately, in May he needed a pacemaker implanted. This recovery was only four days in the hospital and Mason breezed through it. In the fall of 2008 Mason had his final surgery, the Fontan. Everything went according to plan and he was home with us for Thanksgiving.

On April 4, 2009, Mason had flu like symptoms so we took him to the ER. After many tests, pokes, discussions, and tears, we learned that Mason had a rare complication of HLHS called PLE (protein losing enteropathy). After a long hard fight we had to say goodbye to our son on May 5, 2009.

His smile is missed every single day.