herald

Thursday 19 October 2017

'Terrifying' moment I was told of my girl's spina bifida

THE mother of a little girl with spina bifida has said that the diagnosis of the congenital disorder affecting the spine was "terrifying".

Barbara Grouden (40), found out that her fourth baby Hannah (now 3), would have spina bifida just the night before her birth.

She spoke of her appearance ahead of the publication of a nationwide study aimed at identifying the current health and therapy needs of children with the condition which is caused by incomplete closing of the embryonic neural tube.

"I found her pregnancy very uncomfortable. She was a breech presentation and constantly moving," Barbara said.

"When the consultant gave me a date for a section I presumed this was the reason, but it transpires that it was because of her spina bifida."

She was told of the diagnosis, when her husband David Martin was with her, the night before Hannah was born in September 2010.

PREGNANCY

"It was terrifying, but, that said, I'm glad that's the way it happened. If I had known earlier I would have spent the entire pregnancy worrying about something I could not and would not change."

Now, nearly four years later, Hannah is a happy child. She walks and runs around like her peers but will need surgery at some stage to correct her turned feet. The report into the needs of children with spina bifida will be launched by Temple Street Children's University Hospital tomorrow.

It has found that 54pc of them do not have access to a multidisciplinary team clinic - even though this is international best practice - with access to a spina bifida nurse, neurosurgeon, paediatrician, physiotherapist, occupational therapist, urologist and orthopaedic surgeon.

Ireland has one of the highest incidents of spina bifida in the western world with, on average, 34 children born here with it every year.

Children with spina bifida have multiple problems of varying severity including paralysis, obesity, orthopaedic complications and visual difficulties.

fdillon@herald.ie

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