Emily’s story
Medics had all the information they needed to start Caitlin on antibiotics but did not do this for a further 17 hours, until after she had collapsed with septic shock.
In that time, I watched as Caitlin catastrophically deteriorate. She was unresponsive; clearly a baby dying of sepsis, but staff were joking about not having equipment. Her bowel was necrotising and rupturing. She was so unwell she could not keep her blood pressure high enough to supply her brain with oxygen.
This photo shows the pain in her eyes. She’d open her eyes when she heard my voice and I knew she was asking for my permission to die. I gave her that permission; I told her I desperately wanted her to survive, but I’d always love her even if living was too hard and she needed to die.
I don’t know how, but Caitlin survived. She has a catastrophic brain injury and has difficulty controlling her airway. We know one day one of her airway crises will be fatal, and this is expected to happen in childhood.
Every day it overwhelms me to find a way to survive and let my unconditional love of Caitlin, fear for the future and anger at our situation sit alongside each other. I cannot do the job I’m trained to do. Caitlin’s disability benefits make ends meet, but I also know I have to prepare for these to stop the day she dies.
As the law currently stands, there is no safety net for parents in this situation.
