Why Baby Benjamin's story is so important

Have your say

The story of Benjamin is a story that has touched so many people - but has special importance to me having had personal experience of the amazing work doctors, surgeons and medics can do with babies born with congenital heart problems, writes reporter Stephen Briggs.

My niece - and goddaughter - Maisie was born with Hypoplastic Right Heart Syndrome - a condition even rarer than the Hypoplastic Left Heart Syndrome which Benjamin has - although it is not quite as serious.
When I went to the fantastic Glenfield Hospital in Leicester to meet her for the first time, she was only a few days old -but still attached to numerous wires and machines to keep her safe
and well.
Holding her for the first time brought it home how special she is - and how fragile she is too. She needed open heart surgery early in her life, and has also had keyhole surgery on her
tiny heart.

Reporter Stephen Briggs and niece Maisie

Reporter Stephen Briggs and niece Maisie

My twin brother has spent many days in hospital with the long wait for her to be brought safe and well out of theatre.
Three years later she has grown to be a happy, playful youngster - if you didn’t know, you would never be able to tell she had anything wrong with her- but she faces a lifetime of surgeries and procedures.

At the moment she does not require a heart transplant - but there is the chance in the future she will.

Before Maisie was born, organ donation was not something I had ever thought about - but since then - and especially since I first spoke to Ashley about Benjamin over Christmas - I have realised just what a difference it can make.
You don’t know what is round the corner - you don’t know when you - or your loved ones - might need an organ.

I would urge the Government to change the rules from an ‘opt in’ system to an ‘opt out’ system - as seen in Wales at the moment.

The difference donating an organ can make can literally be life and death - and could give the best present imaginable to worried parents, brothers, sisters, sons, daughters, husbands and
wives, and while we have an opt in system, I urge everyone to sign up

MORE: Mum's plea to find a new heart for her prince

New heart miracle for Baby Benjamin

Mum's heartfelt thanks to medical staff who saved baby Benjamin's life

Mum's plea for people to join the organ donation register