CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.
Babies with CHARGE Syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home.
Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE Syndrome often far surpass their medical, physical, educational, and social expectations.
Our youngest son was born with CHARGE Syndrome. The first 2.5 years of his life were spent in the hospital either from post op surgeries or illness. It was a nightmare. In the beginning, we made countless trips to the Arkansas Children’s Hospital in the middle of the night. That’s over 80 miles one way. I may consider myself a pro now, at navigating the system but good lort! I ‘ought to by now.
Our son was pretty much a typical case of CHARGE, having so many of the symptoms visibly present, that he was able to be clinically diagnosed before the genetic testing confirmed 6 weeks later.
√C – Colobama (His are located in his optic nerves)
√H – Heart defect (Aortic Coarctation)
√A – Atresia/Fistulas/Clefts ( CLeft Lip and Full Cleft Palate)
√R,G – Restriction of Growth/Development ( Always been small even thought he was born weighing 8 pounds)
√E – Ears ( Both inner and outer ears are affected and he is totally deaf)
Our son has a long list of diagnosis, like most kids with CHARGE Syndrome. And just like those kids, our son is a warrior. He fights everyday just to accomplish the tiniest of things the typical person takes for granted.
“I know of no identified sub-group within the population of people with multi-sensory impairment who have so many medical problems, of such complexity and severity, and with so many hidden or delayed difficulties, and yet no sub-group has shown such a consistent ability to rise triumphantly above these problems”
– David Brown
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
There are CHARGE families across the globe that have now become OUR family. I have never met a more tight nit group than the mommas and dads that parent these amazing CHARGE kids. Without my CHARGE family, I would be so lost!
If you are looking for more personal resources on CHARGE Syndrome, please email me.