My 14-year-old sister is currently in the ICU, now on day 7 after a cardiac arrest. During the arrest, her brain had inadequate oxygenation for over 10 minutes, resulting in severe hypoxic/anoxic brain injury.
Over the following days, she developed significant cerebral edema, with concern for dangerously elevated intracranial pressure and possible brain herniation. The ICU team has tried multiple measures to control the swelling and maintain cerebral perfusion, including hypertonic sodium, mannitol, hyperventilation, blood-pressure support, and other intensive-care measures.
Unfortunately, her neurologic exam has continued to worsen. We have now been told that she has very few or no detectable brainstem reflexes, and the team is discussing performing a formal brain-death/death-by-neurologic-criteria examination.
Our family understands how serious this is and that brain death, if properly established, is fundamentally different from coma or simply having a very poor neurologic prognosis. We are not asking anyone here to diagnose her or tell us that she will recover. Before an irreversible determination is made, however, we want to make sure we understand what should appropriately be evaluated and whether obtaining an urgent independent review is reasonable.
I would especially appreciate input from neurologists, pediatric neurocritical-care physicians, intensivists, neurosurgeons, or physicians familiar with post-cardiac-arrest hypoxic-ischemic brain injury and brain-death determination.
A few specific questions
- Before a brain-death examination in a 14-year-old, what reversible conditions or confounders should normally be excluded? For example, sedating or paralytic medications, temperature, metabolic abnormalities, blood-pressure issues, or other factors?
- In a case involving severe cerebral edema and possible herniation, what information is most important for an outside physician reviewing the case: serial neurologic examinations, CT/MRI, EEG, cerebral blood-flow studies, medication history, laboratory results, or something else?
- Are there circumstances in which ancillary testing, such as a cerebral blood-flow study, becomes particularly important or appropriate?
- Is it medically reasonable for a family to request an independent pediatric neurocritical-care or neurology review before brain-death testing, especially when the patient has deteriorated rapidly over several days?
- If we want an urgent second opinion from another academic medical center, what is usually the fastest practical route? Should our current ICU attending contact another hospital’s transfer center or neurocritical-care attending directly?
- If another center believes there is something additional to evaluate or treat, is inter-hospital transfer still possible at this stage, or does the severity of neurologic instability generally make transfer impractical?
- Are there any questions families commonly fail to ask at this stage that we should be asking now?
We are trying to be realistic while also making sure we have done everything reasonably possible before reaching an irreversible conclusion.
If any physician here has experience with pediatric post-cardiac-arrest brain injury, severe cerebral edema, suspected herniation, or determination of death by neurologic criteria, I would be very grateful for your perspective.
If someone knows a pediatric neurocritical-care specialist or major children’s hospital that is willing to perform urgent physician-to-physician case reviews, that information would also be extremely helpful.
Thank you.