Theme: Palliative Care

A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.

Page: 8 of 9

A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.

In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — reflects on how she first thought about palliative care. “If I was offered that early on I could see how it would really upset me because for such a long time we were doing everything medically… and I wouldn’t want to think about the worst case scenario… On the other hand if I had known that this kind of standard of care is what we offer for parents and patients — it’s optional but it’s really beneficial, we offer it to everyone — I think I would have accepted it because I needed to talk to someone about these fears that were keeping me up at night and I had no outlet.