Reply To: Urgent. GBS misdiagnosis

Thank you all for your heart felt compassion for Richard and myself. It has been a long (yet quick) few months since I posted on the forum seeking help for our situation which ended up being utterly impossible – Richard died in hospital on November 3rd. He’d been taken off life support more than two days earlier. His heart stopped after being given fentanyl to apparently ease the discomfort of re-learning to breathe through his nose and mouth instead of the hole in his neck from his tracheotomy. Richard spent 8 weeks on the respirator, the first four of which everyone now believes Richard to have been ‘locked in’ before showing signs of awareness or movement. Ultimately, he passed away from being given end-of-life treatment decided on by the hospital for ailments that weren’t then and now never will be confirmed. These included Guillain-Barré Syndrome obviously, which the diagnosis kept being escalated from initially Miller Fisher, then acute motor axonal neuropathy (AMAN) to finally acute motor sensory axonal neuropathy (AMSAN), combined with a suspected cerebral vasculitis or one form or another of encephalitis and continued renal failure.

While he was ‘comatose’ Richard suffered a major internal haemorrhage from a small cut in an artery during a kidney biopsy where it was found that he had a septic kidney and the bleeding was not detected for at least 12 hours after which he was also diagnosed with sepsis and when he started showing signs of consciousness again, it became clear that he was suffering, at least temporarily, an amount of brain damage that they could not quantify. At four weeks of total paralysis, before he’d begun to move again, the hospital told us they were considering removing his life support measures. Richard started moving later that day. Two weeks later they stopped conducting any radiographic testing even though each test had shown at least marginal improvement in his brain activity, yet another two weeks later they discontinued renal dialysis and two days later removed his respirator and nasal gastric and intravenous tubes which were keeping him nourished, against my wishes. But Richard kept breathing. It was obviously difficult for him and required a lot of focus and effort but he kept going even though the hospital refused to reinstate his dialysis and gave him only a fraction of the nourishment he’d been previously receiving, even that I had to fight for. And then they gave him the fentanyl which stopped his heart.

None of what happened makes any sense to me. I struggle everyday to come to terms with his passing and what occurred at the hospital. I’m so confused. Can anyone tell me a similar story or even help me understand why it feels like the hospital were so quick to dismiss Richard as having any chance of survival. It’s taken me six months to collect myself to be able to write this and not break down, even still I am not sure that I have made any sense. For that I apologise. And for your thoughts and concern I am and will always be very thankful.

L.