Kilmeague mum aims to highlight son's rare condition

Brave Owen Walsh

Conor McHugh

Reporter:

Conor McHugh

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conor.mchugh@leinsterleader.ie

Kilmeague mum aims to highlight son's rare condition

Fully recovered: Owen with Dr Dylan Murray who performed the operation

A Kilmeague mother is to the forefront of a campaign to raise awareness of a condition which affects one in 4,000 births.

Normally the various plates in a baby’s skull do not fully fuse until they are a few years old. It is malleable to allow the baby come down the birth canal and also to allow rapid growth in the first few months and years of life.

Saggital craniosynosostosis is a condition where the seams in the skull fuse too soon and the child may (but also, may not) suffer from vision problems, headaches and high temperatures.

There can also be a link to issues such as dyslexia, but again, this is not necessarily always the case.

Originally from Prosperous, but now living in Kilmeague, Marilyn Walsh’s eldest son Owen was born with the condition in 2008.

Now a bright and happy (almost) nine year old heading into third class in Allen National School, as a baby and toddler he suffered from severe headaches.

They were so bad that Marilyn recalls he was hallucinating and it took up to five hours for his temperature to ease.

Three years ago, following a diagnosis of Saggital craniosynosostosis, Marilyn and her husband Ger, were faced with the question of whether to proceed with surgery.

It’s a serious surgery involving a removal of a large piece of the child’s skull and the insertion of dissolvable screws and plates.

Surgeons say that occasionally when they remove the bone, there is occasionally a popping sound as the pressure is released.

Marilyn admits she was very nervous before the surgery, given its obviously serious nature, but is now delighted with the result.

“The neurosurgeon is there as well throughout the operation. I was sh***ing myself. Beforehand he was sitting there telling me all that could go wrong, frightening the living bejayzuz out of ya.

“There can be so much blood loss that they need a transfusion. The surgery can take four to five hours, but in Owen’s case was only three and there were no complications.”

After the surgery she said she could see a “difference straight away. He has a scar from ear to ear - like a hair band but it doesn’t bother him.”

He got sick immediately after coming out of the anaesthetic and the day afterwards his eye swelled shut, which is completely normal because of the trauma that surgery in the area causes. However that lasted only a day, and otherwise he has shown no ill effects or pain.

“He was in hospital for four days and now there’s absolutely not a bother on him. He’ll never have a have a problem with contact sports or anything like that.”

Occasionally, later in life as the person gets older further surgery is required, but she points out “it’s hard to project in what way the kid’s head will be”.

Marilyn says it was very obvious before the surgery that Owen’s skull was different, and post surgery, the change is also very obvious.

“It is corrective rather than cosmetic surgery,” she stresses.

She says that when she mentioned the shape of Owen’s head to doctors after his birth, she was fobbed off.

“They told me the baby’s head will change shape and it’ll be grand.”

The implication was, she felt, that she was neurotic and over-reacting in the manner of a new mother.

Now she realises that there simply isn’t a lot of awareness among parents and doctors about the condition, which affects one in 4,000 births.

An MRI, rather than an x-ray, is required for a diagnoses. Once that was done, Owen was referred to Dr Dylan Murray in Temple Street, about whom she only has good things to say.

“He’s a fantastic man,” she says, and speaks highly of the National Paediatric Craniofacial Centre in Temple Street.

“It’s a very busy clinic up there. They do a lot go great work, and it’s a pity it’s in a prefab at Temple Street.

“They’re also very accommodating for parents and families who might be travelling some distance to Dublin.”

Next month, September, is Cranio Awareness month and a Facebook page, Cranio Ribbons Ireland has been established to create awareness of Craniosynostosis , but also as a place to help parents get in contact with other parents as well as the National Paediatric Craniofacial Centre in Temple Street. There is also a Snapchat account, with the account name: cranioireland[ or contact Craniofacial Ireland at craniofacial.ie