I am very sorry to hear about your son. This really hits close to home as my younger sister (middle child) also had this same problem at birth. She suffered brain damage as a result because the doctors didn't know what was wrong at first, or course that was 36 years ago and medicine has come a long way. We found out much later that this was just one of the side effects of a disease called Ehlers-Danlos Syndrome. We lost my sister to complications of the disease at age 35. Unfortunately, not many doctors are familiar with this rare disease. I also have it and so does my son, though not to the extreme degree my sister had it. Like everything else, the older you get the worse the disease gets and like diabetes it can work on just about every part of your body. If you live near a teaching hospital I would suggest setting up an evaluation with the geneticist to see if you child does have EDs. It is very important to treat this disease early on which will make life easier later on. I wish you the best and may God give guidance to you and healing to your son.