Diagnosed via Facebook: Baby boy's serious condition that could have left him brain-damaged is discovered by stranger onlineOnline friend of mother Charlotte Dent recognised symptoms of trigonocephalyin in Facebook picture of George
Miss Dent says doctors should have spotted warning signs sooner
12:39 GMT, 8 May 2012
A young mother found out her baby son had a condition that could potentially leave him brain damaged from a stranger on the internet.
Charlotte Dent discovered six-month-old George had the rare condition trigonocephaly because a woman whose son has the same thing saw him on her Facebook profile picture.
The condition is so serious that without an operation the one-year-old could be left permanently brain damaged.
Today Charlotte, 22, who lives with George’s father – car factory worker Adam Knowles – in Fazakerley, Liverpool, said she was angry the condition was not spotted by doctors earlier.
Relieved: Charlotte Dent and Adam Knowles with their son George Knowles, who they discovered had a rare skull condition from somebody who made the diagnosis over Facebook
She said she also wanted to tell other parents so babies affected could get the help they need.
Charlotte said: 'My son is six months old and I found out that he has something quite rare.
'All the doctors I’ve been to see and even the health visitors haven’t picked up on this. It was a mum whose son has the same thing.
'If she hadn’t got in touch he could have ended up severely brain damaged.
Unaware: Ms Dent had been using a picture of George on Facebook when one of her online friends spotted the signs of trigonocephaly – something her own son suffers from
'All I want to do is raise awareness so other people can notice it and get something done before it’s too late.'
When baby George was born Charlotte said she noticed that he had a misshapen head but he was checked over and given the all-clear.
TRIGONOCEPHALY: AN INCORRECT FUSION OF THE SKULL
Trigonocephaly is the fusion of the two frontal parts of the skull, also known as the metopic suture.
The metopic suture runs from the top of the head, at the fontanel or soft spot, down the center of the forehead to the nose. It is the only part of the skull that begins closing in infancy.
In cases of Trigonocephaly, a ridge can be seen running down the center of the forehead and the fontanel is usually closed.
Children with Trigonocephaly will have a forehead that looks narrow, and the child's eyes are often spaced closer together than is normal. The forehead will have a triangular shape, like the bow of a boat.
Trigonocephaly affects between one in 2,500 to one in 3,500 babies. It can be difficult to diagnose the condition due to the the variations in severity.
It is not known what precisely causes Trigonocephaly. However, the children of mothers who have taken Valproic Acid for seizures can be more at risk.
It was thought after the birth his different head shape could be a sign of Down’s Syndrome but when he was checked by a pediatrician at Liverpool Women’s Hospital it was dismissed and he was discharged.
After being warned that her son could have trigonocephaly she contacted a specialist at Alder Hey and received the diagnosis the same day.
Charlotte, who is on maternity leave from her admin job at a care agency, said if the condition goes unnoticed it can cause blindness, severe learning difficulties and in worst cases even death.
Charlotte said: 'When he was diagnosed I was absolutely devastated, not only with the diagnosis but he will need a major operation at one year which will leave him with a scar from ear to ear which he will have for life.
'And if it hadn’t been noticed by this woman I dread to think what he would have gone through and what his life would have been like.'
Craniofacial consultant Christian Duncan at Alder Hey said trigonocephaly was a very rare condition and often not picked up immediately.
A spokeswoman for Liverpool Women’s Hospital said: 'We always take concerns relating to care provided by this Trust very seriously and where appropriate we will investigate thoroughly.'