A MUM has opened up about the traumatic moment nurses whisked her newborn baby away from her – saying “there’s something wrong”.
Karly Herriott, 31, had to wait an agonising 24 hours to learn his fate after she heard a nurse say “his face is a bit funny” just seconds after birth.
Mercury Press Karly didn’t see her baby for 24 hours after a nurse said ‘there’s something wrong with his face’
Mercury Press Four-year-old Loui Legend Heath suffers from Treacher-Collins syndrome, a condition characterised by facial and cranial deformities
Mercury Press Loui has a tracheostomy to help him breathe
Loui ‘Legend’ Heath Herriott, four, was born with Treacher-Collins syndrome, a condition characterised by facial and cranial deformities in February 2015.
After a textbook pregnancy, the mum-of-one had to endure the long wait while Loui was stabilised and fitted with a breathing device before she and partner Luke Heath, 32, could meet their son.
Veterinary nurse Karly, from Lancing, East Sussex, said: “I’d had such a normal pregnancy.
“When Loui was born I fixated on hearing his voice and then it stopped.
“He stopped breathing and a nurse ran in and said, ‘there is something wrong with his face, his face is a bit funny’.
“She was in shock and before I could even say anything, they ran off with him.
“When I eventually saw him, he didn’t look the same as other babies.”
The youngster’s condition means he was born with a small chin and so he needs a tracheostomy in order to breathe.
He has almost absent outer ears and compromised middle ear so he has to wear two bone anchored hearing aids in order to pick up sounds.
Loui also has downward slanting eyes as the bones of the eye sockets are so under-developed and he has very small cheekbones.
But his parents decided early in his life to give him a name to live up to – giving him the middle name ‘Legend’.
It was apparent very early on that he was a little legend, the way he got on with everything he has had to deal withKarly HerriottLoui’s mum
Karly said: “It was apparent very early on that he was a little legend, the way he got on with everything he has had to deal with.
She says her “heart breaks” when children laugh at her son’s deformities every time they leave the house, adding: “Everyone stares every single day.
“Children come running into the next aisle at the supermarket just to have a look, even adults who should know better always try and get a second glance.”
What is Treacher-Collins syndrome?
Treacher Collins syndrome is a condition which affects bones and tissues in the face.
Also known as mandibulofacial dysostosis, sufferers of the condition will be born with facial deformities.
These include downward slanting eyes, malformed ears and a small lower jaw.
Many children’s ears will be affected, causing hearing problems.
And some have problems with breathing due to an underdeveloped jaw.
Treacher Collins syndrome is rare, occurring in around one in 50,000 births in Europe.
Karly and Luke, who currently share a one-bedroom flat with their son and all his medical equipment, are also fighting the authorities to ensure Loui gets a bedroom.
He currently sleeps in the living room surrounded by his medical equipment, even though he would love to have his own room.
The couple have asked several organisations for advice and support to help to move to a two-bedroom house in Brighton but claim they have been told that because they own the flat there is nothing that can be done.
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Karly said: “I feel as though we are being backed into a corner and we have nowhere to go for help.
“Any spare money we have goes towards Loui’s care and it’s made it impossible to save for a new house or flat.”
Friends of Loui’s parents have started a Gofundme page to help get Loui a bedroom and for surgery which cannot be performed in the UK.
Mercury Press Karly, 31, and Luke, 32, with son Loui, four
Mercury Press Karly and Luke didn’t see their son for 24 hours after he was born
Mercury Press Mum Karly Herriot, 31, gave birth to Loui in February 2015 after a textbook pregnancy and had no idea for 24 hours what was wrong with her son
Mercury Press Loui currently has to sleep in the living room
Ashley Carter talks about Treacher Collins Syndrome and bullying
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