Baby boy’s serious condition that could have left him brain-damaged is discovered by stranger online

  • Online friend of mother Charlotte Dent recognised symptoms of trigonocephalyin in Facebook picture of George
  • Miss Dent says doctors should have spotted warning signs sooner

By
Rick Dewsbury

07:28 EST, 8 May 2012

|

08:44 EST, 8 May 2012

A young mother was told 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 spotted the tell-tale signs on a Facebook profile picture.

The woman spotted the ridge running down George’s forehead – a sign that he has the condition. It is so serious that without an operation the one-year-old could be left permanently brain damaged.

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

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

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.

The condition is caused when the frontal part of the skull fuses together to produce a head shaped like the bow of a ship.

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.’

 

Here’s what other readers have said. Why not add your thoughts,
or debate this issue live on our message boards.

The comments below have not been moderated.

– susan, rochdale, 09/05/2012 00:48 Ego? Pfttt, didn’t realise that having passion and drive about your job made you egotistical? Well if it does, I’m proud to say I have a huge one. And of course, as doctors we’ve never lost loved ones or been poorly ourselves have we?! No, because we’re superhumans, who are burnt at the stake if we show weakness or make a mistake. Anyway, must dash, have a ward full of patients waiting for me to not care about them.
– DrB, wishingshewaselsewhere, 9/5/2012 7
duh! You’re egotistical because you can’t see that the majority of doctors DON’T CARE because you think you are ALL doctors and are superior. And when you have a loved one die BECAUSE of a doctor, then come back. As if i meant doctors don’t have relatives that die, jeez and I thought GPs were supposed to be intelligent.

– susan, rochdale, 09/05/2012 00:48
Ego? Pfttt, didn’t realise that having passion and drive about your job made you egotistical? Well if it does, I’m proud to say I have a huge one.
And of course, as doctors we’ve never lost loved ones or been poorly ourselves have we?! No, because we’re superhumans, who are burnt at the stake if we show weakness or make a mistake.
Anyway, must dash, have a ward full of patients waiting for me to not care about them.

– susan, rochdale, 08/05/2012 17:34 As sorry as I feel for your child’s disabilities, you are WRONG. Very easy to doctor bash when you have no medical training or understanding of the hundreds of thousands of rare diseases we will never come across in our lives, and are expected to diagnose. I will move heaven and earth, leave work late, not eat, drink or pee to treat my patients so do not tell me “doctors” don’t care.
– DrB, wishingshewaselsewhere, 08/5/2012 21:07
good for you, shame my son didnt have the same eh? But what’s a child being left disabled matter when you have an ego like yours. Good old doctors…….. by the way, i didnt expect the doctor to diagnose, i just wanted a referral after my sons forehead started bulging out! Too much to ask? Seems so, i’ve never come across one good doctor. And there’s plenty like me who say the same. So before you tell us doctors care, i suggest you go and meet some of the families that have lost loved ones due to doctors not giving a

I see no evidence of any incompetence. This is an extremely rare condition that I for one have never heard off ( I am medically qualified). The problem with very rare conditions is that they are easily missed. This is not incompetence it is life.

Gorgeous little man! Can’t see any ridge on his head in these pics though. Maybe posting a pic with whatever is the problem visible would help save others too.

Can I just state that the comment made was not from myself. My account was hacked or used without my knowledge. I wish the little one all the best for the future

He is so cute!!!
Hope he will recover from the op and will have a normal and happy life!

– susan, rochdale, 08/05/2012 17:34
As sorry as I feel for your child’s disabilities, you are WRONG.
Very easy to doctor bash when you have no medical training or understanding of the hundreds of thousands of rare diseases we will never come across in our lives, and are expected to diagnose.
I will move heaven and earth, leave work late, not eat, drink or pee to treat my patients so do not tell me “doctors” don’t care.

Dr House…exists!

To – spidercat, Cheshire, 08/5/2012 18:19 – you are a spiteful old troll with an ugly personality.
I hope this gorgeous baby will be ok and good luck and best wishes to little George and his family.

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