Margot’s story – supported by Shooting Star Children’s Hospices

“Whilst we were still on the NICU (Neonatal Intensive Care Unit) we were put in touch with a hospice. It was something I just couldn’t get my head around. There was such a disconnect. In my mind we weren’t those people, people that needed charity, certainly not a hospice. How wrong I was, Shooting Star Children’s Hospices became our lifeline”

It’s often hard to truly explain what a children’s hospice does, because every child and every family’s journey is different. That’s why being able to share stories like Margot’s is so important. Thank you so much to Jodie, Margot’s Mum, for letting us share her story for #ChildrensHospiceWeek

“They organised everything and made sure we had anything we could possibly need. From signing DNRs, contacting the GP, nurses, medications, a 24 hour help line and they made days like this one possible too.

They made a special trip out to us at home to make casts of Margot’s tiny little feet. Not only are the casts we made treasured keepsakes but the memories we have of the day itself are ones I will treasure forever too. Holding Margot while we dangled her feet in the plaster, she loved it, all relaxed and content. We were happy and content.

They were there with us every step of the way. Checking in to see how we were, at the end of the phone talking us through yet another tube feed gone wrong. They were there at the end too, that final afternoon when Margot took her last breaths. Gentle and kind, knowing just how to be and what to say.

The support and care didn’t end when Margot died. They provided a special cold blanket for her cot at home and when the time was right, a beautiful room at the hospice. A nurse helped me to dress Margot for the funeral and was by my side when I put her into her casket and I gave Margot her last kiss.

Even now we are still being supported by them with counselling, memory days and support groups. The work and services that Shooting Star provide for children and their families is beyond incredible.”