‘Swan baby’ boy fighting for life as medics still can’t find cause of collapsed lung

A BABY boy is fighting for his life having never left hospital – as medics still don't know what is wrong.

Little Tommy was born with a collapsed lung, and still hasn't been diagnosed.

The six month old youngster has been dubbed a "swan baby", due to his condition being unknown – it stands for "syndromes without a name".

He has spent his whole life in intensive care, while his Bristol family are left in limbo.

Medics from Southampton, Birmingham and Great Ormond Street Hospitals are now all involved to try and work out what is causing his problems.

Tommy is now being tested for Leukemia and Hemophagocytic lymphohistiocytosis, a rare disease that usually occurs in infants and young children.

His mum, Sophie Davey, told of her heartbreak knowing he is all alone and stuck in hospital.

She said: "It's almost been seven months now and we don’t know which direction things will go in.

"Two weeks ago the hospital prepared us for the worst and said he would need to be rushed to Birmingham for a transplant but luckily his liver stabilised.

"We haven't been able to bring him home since Christmas day and it has been one massive rollercoaster but he has fought all that has been thrown at him.


“My son has heart problems and chronic lung disease but there is also something else going on with him which no one is able to figure out." 

Her partner, Curtis, has struggled to be with his son enough, as he has been forced to go back to work to pay their mortgage.

Sophie has been unable to work due to mental health issues, so Tommy's gran decided to set up a gofundme page to keep them afloat.

The 47-year-old said any donations would go towards Tommy's treatments and the couple's financial needs.

Swan UK explains: "SWAN stands for ‘syndromes without a name’.

"It is not a diagnosis, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause.

"Syndromes without a name are also referred to as undiagnosed genetic conditions, unknown genetic conditions or undiagnosed genetic disorders.

"Approximately 6,000 children are born in the UK each year with a genetic condition likely to remain undiagnosed."

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