I thought I was going to die

Nick Embleton

I contacted Dani when I was creating an online educational course for healthcare practitioners (see link at the bottom) and she was kind enough to share her story in her previous post about Olivia-Grace available on substack here.

Balancing hope with honesty is one of the most delicate challenges we face when dealing with the uncertainty of sick infants. We all realise the need to be honest, but at the same time we must avoid crushing hope.

We need to learn to build relationships with parents, to involve them in all aspects of care, and avoid the incessant doom-speak. It’s almost as if were we to celebrate small achievements (breathing without support, having less desats, tolerating more milk etc.) we would not be acting honestly.

I don’t think any of us know how best to do this, but I do believe it is possible to do both: to acknowledge uncertainty and the likelihood of a short life, whilst at the same time helping parents retain hope that their baby may do better than we fear.

Setting up this substack project was never about making this a purely educational website. I don’t pretend to know the answers, and even after 30+ years I still struggle to know what to say, and how best to behave. I hope by providing a platform for parents to share their stories of love and loss, we can all take away something that helps us reflect and perhaps do a bit better next time.

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This post is also published here on Substack.