When he was born, Jacob Hill's parents knew there was something wrong with him but couldn't work out what it was.

As the youngster reached a few months old, Sarah and Mark Hill noticed their child's head was an unusual shape, protruding at the front and narrowing behind to create a shape like a cycle helmet.

Jacob was referred to Royal Alexandra Hospital for Sick Children in Brighton where he was X-rayed and the results sent to a specialist at Great Ormond Street Hospital in London.

He was diagnosed with the rare condition, craniosynostosis.

Mrs Hill, 33, from North Lane, Portslade, said: "The condition is still quite rare and there are differences of opinion in the medical world about surgery for those children like Jacob who are not badly affected.

"If it was simply a cosmetic thing then we would not consider any surgery but there is the risk he could suffer some brain damage if we don't. It would be like a time bomb waiting to go off. Ultimately I think surgery is going to be inevitable."

About one in 8,000 children is born with a form of the condition, where one or more of the seams of the skull, known as sutures, have fused while the baby is still in the womb.

As the skull cannot expand properly to allow for the rapid brain growth which takes place in early years, extra growth often occurs in another area, accentuating the abnormal skull shape.

In some forms of the condition, children can experience other abnormalities such as webbing of the fingers and toes and an inability to breathe through the nose.

Jacob, now two, is a happy child who is luckier than most sufferers as he has a relatively mild form of the condition but there is a risk he could be damaged by increased pressure on the brain and skull.

Mr and Mrs Hill will be meeting with Jacob's consultant next month to talk about the possibility of surgery.

Jacob has been referred to the speech and language therapy unit at the McKeith Centre in Brighton and will be closely monitored during the next few years.

Mrs Hill, who works for Seeboard, said she had never heard of the condition until Jacob was diagnosed.

The lack of information about the conditions made help from Headlines, a craniofacial support group, invaluable.

She said: "We were luckier than most people as we knew a doctor whose niece had just been diagnosed but it wasn't until we contacted the support group that we found out everything.

"Most children require surgery at some stage and as soon as you are told your child will require neuro-treatment you think of brain surgery and brain damage but this is not a condition which has to be all doom and gloom.

"This is why the support group is so important.

"It provides advice and information for families from people who have been there and is providing information for GPs."

Mrs Hill and her work colleagues have helped raise more than £1,100 for the group.

The organisation can be contacted on its web site at www.headlines.org.uk