MSI Press Blog

Doah is, by nature, a remarkably robust person. He almost never complains. People who know him well often remark on how much discomfort he tolerates without a word. But there is one situation where his patience vanishes instantly: when he cannot breathe well. Doah has sensory overload, something first identified by his pediatrician, T. Berry Brazelton, during our Boston Children’s Hospital stay  in 1980. Most of the time it sits quietly in the background of his life. But when he is sick— especially with something like bronchitis— and breathing becomes difficult, the overload can come quickly. And when it does, patience disappears. The echoes of his earlier airway struggles— the tracheotomy and the subglottic stenosis— are never very far away. Add depleted oxygen levels to the mix ( he is on oxygen 24/ 7 now), and even a routine respiratory illness can push his system past its tolerance point. When that happens, Doah does not wait politely. He demands that I fix the problem. ...

  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 ...

  I recently told a pulmonologist that Doah—now nearly forty‑seven—entered this world with a zero percent chance of survival stamped on his chart. That was the official medical verdict. The unofficial one was harsher: the doctors called me immature for refusing to accept that he would die. They insisted that hope was denial, that advocacy was naïveté, and that my unwillingness to surrender him to their predictions made me the problem. Their solution was to remove him from me entirely. They tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous and unlikely to help in any meaningful way. The message was unmistakable: If you won’t give up on him, then we will take him from you so we can. I did what any mother who knows her child better than a prognosis would do. I removed him from the hospital, gathered what little we had, and took him out of state. The doctors we found there were not optimistic either—but they were willing ...