Theme: Tracheostomy

Exploring the idea of a Trach: “No one could give me a guarantee that it would extend the quality of her life.”

Page: 4 of 4

Exploring the idea of a Trach: “No one could give me a guarantee that it would extend the quality of her life.”

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 — describes all the reasons they opted not to get a trach for Julianna: her love of talking, the potential complications; the lack of a guarantee; BiPap was working; her condition was progressive.