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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Palliative Care

NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

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NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

The mother and father of a son born with a very rare genetic condition talk about how frustrating it was to be thrown into the medical system as the “hub of information” for their son’s treatment as different medical specialists only provided small nuggets of guidance without any sense of unified care.

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