Jennifer and Stuart
Jennifer and Stuart, parents of Ben, who had Sanfilippo Syndrome and died at age 17, and siblings Noah and Isabelle.
Palliative care gave us a language to talk to the medical specialists.
Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how palliative care helped them translate our philosophy of care into a conversation with Ben’s providers. Palliative care also gave them a space to re-evaluate their decisions over time without feeling badly. Doctor: We are interpreters who help translate between the specialists and the family.
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Palliative care gave us a language to talk to the medical specialists.
Palliative care helps reframe interventions like feeding tubes.
Palliative care fills a huge hole that comes from having a medically complex kid.
Spinal Fusion Surgery: Creating a space to consider the decision
