“There is no easy way to say this, but your baby is very, very sick.” I was 37 weeks pregnant, and they had just found our baby had severe dilated cardiomyopathy. The doctor thought she would die within days. He suggested injecting potassium in her heart, to be certain that she would not survive terribly impaired.
Nadia kicked and squirmed inside me as I tried to wrap my mind around this, stunned with shock. It made no sense to take action. Could we not simply let her die in peace? He said this was not an option. But later—perhaps because I asked—we found palliative care mentioned in the discharge note.
And so at our next appointment we were greeted by two palliative care 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 question much later: it was important to them to get a sense of us, to judge what information we might be able to take in.
“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.
One of the doctors echoed my words back to me before responding. Then he slowly, gently, answered. She would be swollen, especially her belly, but she’d otherwise look like any other infant. She might not breathe once the umbilical cord was cut. She might not survive the delivery. His words were precise, straightforward, no nonsense, and his approach soft, and this combination resonated with our need to know things, but at the same time to be sheltered from the blows of this knowledge.
The other doctor said that parents experience this short time spent with their terminally ill infants as meaningful and important. She explained how Nadia would be fed and her pain relief administered. Precise words again. “Keeping her comfortable,” the most common sentence we encountered when inquiring about palliative care, was too vague for me.
Both doctors referred to our daughter by name, showing us they knew how real she was to us. They were at ease with our tears. In the space of a couple of hours they had transformed what we were going through from something dreadful to something potentially meaningful. I even offered to donate her organs, but in the end that turned out not to be possible.
Nadia died a week later, minutes before she was born. Thanks to our conversation I was braced for it, and I spent the time after delivery holding her while she was still warm and getting to know what I could of her little body. It is strange to be a mother of a stillborn child, you haven’t really met your living baby outside the womb but you still somehow know them intricately, and this time after death matters.
Our entire family consisting of Nadia, her older brother, my partner, and myself, were then offered to move to Helen and Douglas house for a few days. This is a hospice for terminally ill children that also provides care in the disorienting days just after death. Being far away from our countries of origin, from friends and family, from people who loved us, the sense of community Helen House radiated provided us with a kind of cushioning that we never expected to have. It seems impossible, but a hospice for terminally ill children is a happy place. A place with infinite sadness as well, but the two coexist without any friction.
When I look back on those days almost a decade later, the heartwrenching pain of Nadia’s death is still there, but so is the feeling of being held in a way I have rarely encountered as an adult. I have learned how to be a mother to a dead baby, and how to once again feel joy at life going on. The seeds of both were planted in my experiences of palliative care, where life and death and meaning and connection and beginnings and endings all come together.
Ana Todorovic
A version of this article appeared in the British Medical Journal
