Charlie is my son. He has an incredibly fat medical file, but I will try to hit the highlights here–for both the curious and those who may be in a similar position.
Charlie was born via emergency C-section in 2007. He was having uncontrollable heart arrhythmias and shortly after birth his heart failed completely. He was placed on a life-saving machine known as ECMO, which can do the work of the heart and lungs when they are too weak. Unfortunately, a potential side-effect of ECMO is bleeding in the brain and after about twelve hours it was revealed that Charlie was suffering from major bleeding in pretty much every part of his brain.
There were many tough decisions to me made, and we chose to let Charlie stay on ECMO for one additional day in the hope that his heart would have more time to rest. In the mean time, his brain would continue to bleed. After twenty-four hours he was removed from ECMO–we weren’t sure he’d last the night–and his heart did what it was supposed to do.
As a result of all that bleeding, Charlie deals with several medical issues. For those of you who need to know the details, here they are:
- Charlie was diagnosed with “failure to feed” and had a feeding tube placed at four weeks of age. He now eats completely by mouth.
- Hydrocephalus that resulted in the placement of a shunt at four months of age.
- A seizure disorder that requires daily medication, but does seem to be under control.
- Vision loss on one side, which has improved greatly, but is still apparent.
- Cerebral Palsy-a neuro-muscular condition that causes him to have low muscle tone
He’s also cute as a button.