MSI Press Blog

  The Right Doctors at the Right Time Doah’s story is threaded with miracles, but some of the most important ones came wearing white coats—two young physicians who were not yet famous, not yet the giants they would become, but who saw what others missed and dared to think differently. When the doctors in Pittsburgh had given up on Doah—when they told me I was immature for refusing to accept his death, when they tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous—we packed up and left. We went to Boston, to Dr. Arnold Colodny, listed as one of the two top GI doctors in the USA at the time. Dr. Colodny? He had been Noelle's doctor when we were living in Boston. And we loved him. Her did so much good for Noelle! So, I picked up the phone and called him. If we showed up in Boston, would he take Doah? Yes, he said, not knowing we were planning to steal Doah from the hospital, metaphorically fly to the airport, and literally fly ...

  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...