Children requiring invasive home mechanical ventilator support are medically fragile, often with multiple comorbidites rendering this population at high risk for mortality. There are no specific studies examining mortality rates, causes for mortality and preventative measures.
Retrospective review of mortality data from the University Of Michigan Pediatric Home Ventilator Program (PHVP).
From January 2002 until April 2009 the PHVP provided care to 198 children requiring tracheotomy and invasive mechanical ventilator support at home. During this time 27 children have died. Of these deaths 3 were anticipated due to untreatable disease progress. The remaining 24 deaths were unanticipated. These deaths were attributable to acute hypoxemic event, including mucus plugging of the tracheotomy (N=7), Sepsis (N=3), Pneumonia (N=1), Decannulation of tracheotomy (N=2), Sudden cardiac event (N=4), Abcess (N=1), pulmonary embolism (N=1) and bronchospasm (N=1)and unknown causes (N=4). Age of time of death under one year (N=8), 1–10 years (N=8 ) and over 10 years (N=11 ). Average age of death was 8.2 years with age range of 9 months to 25 years. Time from initial discharge home on a ventilator until death, under six months 12 cases, with a range of one day to 21 years. Average length of time home before death was 4 years. Place of death include home (N=12), emergency room (N=1), PICU (N=13), long term care facility (n=1). Autopsy was performed on only 9 of the children. Of the 27 deaths 13 had documented private duty home nursing services active at the time of death. In 4 of the cases the home nurse was present at the time of the event the ultimately resulted in the child's death.
The majority of deaths in this study sample were unanticipated. Airway events, young age and home less then 6 months are risk factors for unanticipated death.
Preventative strategies aimed a reducing risk of tracheotomy plugging and decannulation, frequent contact by skilled providers, including frequent phone contact and clinic evaluation may reduce mortality rates.
Ann Marie Ramsey, No Financial Disclosure Information; No Product/Research Disclosure Information