General Discussion
In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]pnwmom
(108,980 posts)one group of Harvard docs -- psychiatrists and psychologists -- who practiced out of Boston Children's.
And the other was a group of Tufts physicians -- metabolic and GI specialists -- who practiced out of Tufts Hospital.
The Harvard group wrested control of Justina's care from the Tufts group -- with the approval of DCF -- when Justina had the misfortune to end up in the emergency room there.
The Harvard psychiatrists decided that the Tufts metabolic specialists were wrong about the diagnosis. They insisted the parents sign a document agreeing to put her under the care of B.C., to allow them to take Justina off her prescribed medications, and to promise not to consult with any other physicians inside or outside of BC. And when the parents wouldn't sign, they got DCF to take custody away.
The Harvard psychiatrists wouldn't even allow Justina to be seen by the GI doctor she originally came to BC to see, Dr. Alex Flores. (He had recently moved his practice from Tufts Hospital to BC; and he hadn't been replaced yet at Tufts, so when Justina had a crisis Dr. Korson -- the metabolic specialist -- recommended to her parents that they take her to B.C. to see Dr. Flores. Imagine how much Dr. Korson regretted that recommendation!)
So the B.C. Harvard docs weren't interested in having her seen by B.C.'s own Harvard metabolic specialists. These psychiatrists had already determined on their own that the proper diagnosis was somatic disorder and she shouldn't be seen by any other doctors.
By the way, the psychiatrists felt that she had had too many surgeries. One was a surgery to remove 20 inches of cartilage that was wrapped around her intestines. Certainly their own colleagues, the GI specialists at BC, would have agreed with that surgery. (Especially Dr. Flores, the one who performed it.) The only other surgery was to install a "cap" so her non-functional colon could be flushed. This was a relatively new procedure at the time it was done and the doctors at Tufts only did it after a careful study to show the functioning of her colon. But among the doctors across the country who were also performing the procedure -- Harvard doctors at Boston Children's, of course. So the procedure the Harvard psychiatrists deemed excessive and unwarranted is performed by their own colleagues at B.C., for children just like Justina. (It's not a treatment for mitochondrial disorder; it's a treatment for a non-motile intestine.)