Palliative care is not just for those who are dying.

And so at our next appointment we were greeted by two paediatricians who wanted to talk to us. They asked us what was going on. It felt natural to tell them our story. They listened intently, and I realised the purpose of this questioning much later: they wanted to get a sense of us first. “What would you like to happen?” I choked up in tears. I hadn’t told anyone about my wish to meet her, to hold her while she was dying. They said my wish was common, and a knot of tightness in my chest unravelled. “And what do you fear most?” I was afraid how this would affect my relationship with my partner. He feared that our son might develop the same heart condition. “What would you like to know?” What she will look like when she’s born, if she’s not alive. I desperately needed to know all the details.