Rian (in yellow) and his brother

Rian was born at 11:55p.m. He was a big baby with long, skinny fingers. And unusually quiet. Following an unconvincing clean bill of health at his two-week visit to the pediatrician, he stopped feeding and was never comfortable in any position. On the morning of March, his heart stopped beating. Luckily for us, he had been rushed by ambulance to the hospital.

Rian was diagnosed with complex congenital disease. There were no doctors available locally to do his surgery—so he was flown by helicopter, alone, at 10 pm that night, 4 hours away. I followed by the car the following day where he was seen by the pediatric surgeon and diagnosed with an interrupted aorta Type B, and a ventricular septal defect. He had surgery that day and remained hospitalized for another week.

I was four hours away from my other children who were in school—so with my instructions in hand—I remained home for the following ten months being a nurse. Rian had his second surgery four months later where he had the Ross-Konno replacement of the great arteries. Rian has had just one surgery since his second, but has a residual learning disability as a result of his brain being under-oxygenized for the first six weeks of his life. That is probably the greatest challenge that we face with him.

Rian will need more surgery, as his implant must be replaced as he grows.

We are doing all we can to give him a normal life. He plays, rides his bike and recently joined a karate class.

School is a serious challenge for Rian.