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Susan Spencer

Founder of NEC UK

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Tobias's Story

Hi, I'm Susan Tobias's Mummy and former founder and chair of NEC UK. I retired from my position early 2020 leaving the Charity to the remaining trustees.


Tobias was born at 30 weeks gestation, he weighed 2lb 13oz. He had an absolutely incredible amount of hair on his little head, I definitely think the heartburn myth may well have some truth to it.

Tobias was in very good condition at birth and was originally only intubated so he could be given a dose of surfactant to help his lungs to function better. Impressively just an hour later he was breathing completely unaided. Tobias remained well making great progress for 5 days and absolutely charmed everyone who met him! He had such a character to him.

On the afternoon of day five Tobias very rapidly developed NEC. Despite every thing possible being done for Tobias including a urgent blue light transfer across London to Great Ormond Street Hospital during the night. Tobias died post surgery the following day in the loving warmth of my arms. He was 6 days old. This October Tobias would be 14 years old. I feel really honoured to be part of NEC UK and together I know we can make a difference.

Much love, Susan. x

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