How GOSH saved my daughter's life after she lost her vision to an undetected brain tumour

In less than 24 hours, the lead neurosurgeon at GOSH managed to mobilise a full team from across the UK

"Millie has regained much of her vision since, and she is in complete remission with very real hopes of a full recovery. I can draw breath once more." (Marco Previero )

Millie had just turned seven when she suddenly went blind overnight.

She went to bed a normal, healthy little girl, and when darkness came that evening, it nearly came for good.

A refusal to believe what was happening took hold – and then came grief. I knew my world and that of my daughter’s had just changed for the worse.

But what I didn't know was that Millie would go on to be diagnosed with a malignant brain tumour, which not only risked her sight but also her life.

On the Saturday in April 2013 that Millie lost her vision, she was seen in an urgent appointment by GOSH’s lead neurosurgeon, who confirmed that the tumour was pressing on her optic nerves, depriving them of oxygen and slowly killing them off. This would be an irreversible process leading to certain and permanent blindness. There was only one option - to open her skull during an uncertain procedure lasting several hours in an effort to de-bulk some of the lump.

A brain operation is not in itself without material risks, including major strokes and even death. But I instinctively sensed that the neurosurgeon and his team were acting in Millie’s best interest, not because she was special, or my daughter, but just because she had become a patient under their care.

I would quickly discover that “the child first and always” was not just a motto at GOSH but a principle guiding each and every decision that was made to save Millie’s eyesight and, ultimately, her life.

When I consented to surgery, only one of two operating theatre was available – a situation not unusual for a Sunday – with an already full list of equally deserving patients.

In less than 24 hours, the lead neurosurgeon managed to mobilise a full team from across the UK. He did so ahead of performing a nine-hour operation on a Sunday, a day he was not scheduled to work, with the slim hope it might mean Millie would be able to see again one day.

She woke from that operation without her eyesight. But, slowly, over the course of the worst year of my life, parcels of light started travelling through her optic nerves again. "The child first and always" bore tangible, life-altering results.

Millie after a third operation on her brain (Marco Previero)

Acting in the child’s best interests is a core collective belief that drives much of the behaviour at GOSH. I experienced it fully on that day, and have every day since. And not just from the top team, but also from all the nurses in the specialist neurosurgical ward where Millie spent several nights after each of the three brain operations she ended up having over the course of seven brutal months of cancer treatment.

Millie has regained much of her vision since, and she is in complete remission with very real hopes of a full recovery. I can draw breath once more.

But when I was gasping for air, during those first few weeks, I could not have lived through Millie's ordeal without the staff at GOSH, without the otherworldly capacity for humanity these regular human beings have, and the effortless support they provided to enable ordinary parents like me cope with the most extraordinary of circumstances.

Your names - Maria, Vanessa, Chloe and Jesse in particular - will remain forever engraved on the deepest parts of my heart. When the worst happened to my daughter, you and GOSH made all the difference.

Author Marco Previero is the author of Dear Millie: Diary of a Seven Year Old with Cancer. It is available on Amazon and is in support of Great Ormond Street Hospital.

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