Jamie’s story

Jamie tells his father’s story to help raise awareness of sharing your condition with your friends and family.

Whilst I personally do not suffer from Haemophilia myself, I wanted to send in my late father’s story in case it can help to raise awareness to others with the disease of how important it is to tell others about it (as I can completely appreciate the many reasons why they may choose to keep it secret – the stigma attached with the blood contamination scandal, not wanting to be defined by it etc).

In December 2016, I received a call one morning from my father’s partner saying that he had been taken into hospital overnight with a bleed on the brain, having been complaining of headaches and blurred vision during the previous day. He had kept both the haemophilia – and the Hep C he had contracted from the CBS – secret from her and their circle of friends, I think because with them he was not “the person with haemophilia”, he could be re-born in a way.

When I arrived at the National Hospital for Neurology & Neurosurgery in Queen Square at about 3pm once he had finally been moved, he was being rushed into surgery and I was asked to sign all of the legal forms allowing them to do anything they need to keep him alive, given the severity of the procedure.

I had assumed they were fully aware of the haemophilia as it would show on his NHS record or something, but unfortunately as he had never been to the original hospital with a haemophilia-related injury/illness, they were completely unaware, and no central database was used by the NHS to share records.

The surgery therefore proceeded without the use of Factor 8, and ultimately the bleed spread to my father’s brain stem. It was only when my mother arrived as the surgery was ending and mentioned the haemophilia that any action to control the blood clotting was taken, but of due to no fault of the surgeons at all. He would remain in a coma for a further 5 days before being declared brain-dead and life support being turned off.

I’ve sent this in as I feel compelled to plea to others how important it is you share the condition with your friends and family, as hard as that may be. It is still highly likely my father would have passed away after the initial bleed to his brain even if the entire medical staff knew about the haemophilia, but there’s always a chance he may have survived and would still be here.

Thanks for continuing to do all you guys do for people like my father.