Letting my daughter goBMJ 2018; 360 doi: https://doi.org/10.1136/bmj.j5771 (Published 03 January 2018) Cite this as: BMJ 2018;360:j5771
- Stephanie Nimmo
- @stephnimmo and www.wasthisintheplan.com.
I always knew Daisy would die before reaching adulthood. She was my fourth child, born prematurely in December 2004 with a severe form of rare genetic condition called Costello syndrome.
Daisy required complex care, but every decision about her care was made on the basis of improving the quality of her life, which meant helping her do the things she loved, such as being at home with her family, going to school, and playing with friends.
Staying out of hospital
I was trained to undertake most of her care, including setting up her parenteral nutrition and additional fluids, administering multiple daily intravenous infusions, and inserting catheters into her Mitrofanoff stoma. When possible, outpatient appointments were conducted by phone or without Daisy present. To minimise emergency hospital admissions and stays, …