Millie Niss

As told by Millie's mother, Martha Deed

“An underlying medical condition” is no excuse for lethal medical errors.

Millie Niss was a much-published web artist and poet. She was my only child and a wonderful daughter. She was a talented patient advocate due to a lifetime of painful and debilitating illness, diagnosed as Behcet’s Disease in her early 30s.

Behcet’s is a rare, auto-immune, inflammatory disease which causes vasculitis anywhere in the body. It is often characterized by severe joint pain, skin lesions, and vision loss. It is rarely fatal, but involves frequent medical intervention.

I am a retired psychologist with decades of experience in advocacy. Yet our experience and our instinct that Millie’s care in a community hospital ICU was going desperately wrong could not save Millie.

Millie died November 29, 2009.  She was 36 years old. She entered the ICU on November 1, 2009 with swine flu and was intubated. But she was not silenced. After she had recovered from the flu, but a week after becoming paralyzed from the chest down, Millie wrote:

I actually asked Dr. W, if I was still at risk of relapse, and she seemed quite confident, but I sensed something was stewing ‒ I think I got a secondary infection whose symptoms didn’t show until the first day upstairs [brief transfer out of ICU]. I became feverish and my throat felt suddenly worse when it had been OK earlier. Now I hope we can treat the infection successfully FIRST before trying to wean [off the ventilator] at all. (Nov 21st)

What did we know and when did we know it?

  • From admission testing, we knew Millie was free of infection other than swine flu when admitted
  • Developed MRSA and other infections in her central line, urinary catheter, and lungs
  • Developed sepsis
  • Required emergency surgical procedures at bedside
  • Intubated/reintubated
  • Readmitted to ICU
  • Received antibiotics intermittently despite her immune-suppressed status
  • Required multiple transfusions due to medications given after we had refused them
  • Waited nine days for a CT scan despite our protests
  • Never had an MRI, though one was recommended

We did not know the hospital:

  • Had more than a dozen active “Plans of Correction” on Millie’s date of admission.
  • Had received 72 citations from New York Department of Health since 2005.
  • Lacked patient complaint policies and procedures, as was discovered in a routine survey by the Medicare accrediting agency a year later, resulting in a Plan of Correction.

Millie had endured and been damaged by medical care previously ‒ often enough that she had requested an autopsy if she died.

The autopsy revealed her cause of death as osteomyelitis of the 8th thoracic vertebra with near total necrosis of the spinal cord, severe epidural inflammation and abscess: a missed diagnosis.

The New York Department of Health issued two citations related to Millie’s care.

-Martha Deed, Ph.D., Author, The Last Collaboration (Furtherfield, 2012).  A multi-genre fatality review.