Precerpt from Raising God’s Rainbow Makers The Surgeon Who Didn’t Need a Syndrome Name or a Protocol
In the early 1980s, before CHARGE Syndrome had a name, before anyone knew that a cluster of anomalies belonged together, before “multidisciplinary clinic” was even a phrase, there was just a little boy with a tracheostomy and a mother who refused to accept the limits of geography. Doah was five. We were living in Pittsburgh, and the message was clear: there was nothing more to be done . His airway was too narrow, too fragile, too complicated. The local surgeons were skilled, but this was beyond their experience. No "implication" hung in the air; they said it out loud and multiple times (because I pushed back). There is no hope for Doah. In December 1980, when I asked about future expectations, the head of ENT put it bluntly, "His future is days, weeks if you are lucky." I didn’t accept it. So, I did what any mother with a medically complex child and no internet would do: I marched myself into the medical school library, found the Journal of Otorhinolaryngolog...