Friday, August 22, 2008

Brain surgery may change a little girl's life!

MILLIE Mackenzie has suffered debilitating epileptic seizures since birth.
Now pioneering brain surgery may be about to transform the five-year-old's life.Looking at her newborn daughter, Kelly Mackenzie felt the overwhelming love that any parent would. But she also had an uneasy sense that something wasn't quite right.

"All the prenatal scans were fine but when Millie was born, I had this feeling that something was wrong – I just knew," she says.Kelly had noticed that Millie was making strange grimaces and gagging reflexes, and so when she was very sick at six weeks old, Kelly and her husband Mark took her to their local hospital.

"At first they wanted to send us home, but eventually they sent us to the paediatric hospital in Kirkcaldy," says Kelly. "Millie had seizures throughout the night, and in the morning we were sent to the Royal Hospital for Sick Children in Edinburgh."Within the space of 48 hours, Millie had been given what Kelly describes as "every test you could possibly imagine" by the staff, whom the Mackenzies can't speak highly enough of for their support and keeping them informed.

An MRI scan revealed a small lesion on the front of Millie's brain and the initial diagnosis was a condition called schizencephaly, which is treated in the same way as epilepsy."At first, Millie was just a normal baby who had something similar to epilepsy," says Kelly. "But a lot of the drugs they tried with her had such bad side-effects.

They made her lethargic, for example. Then we started noticing that in terms of her development, she just wasn't reaching the milestones she should be."The Mackenzies found that their daughter would learn new skills, such as how to feed herself, or learn new words, but then forget them after a few days of bad seizures. She was also unable to learn how to walk and had to use a wheelchair.

When Millie was four, the Mackenzies returned to the Sick Kids hospital for another scan. "We went along never dreaming that things would change," says Kelly, "but the doctors got in touch and said, 'We're so sorry, the old scanner wasn't picking it up so clearly, but it's not schizencephaly'." Millie was diagnosed this time as having epilepsy with developmental delay, and her parents were told that she might be a candidate for brain surgery.

The Mackenzies knew little about epilepsy or seizures before they had Millie. Epilepsy is the most common neurological disorder in childhood, affecting one in 200 children. It's not a single condition – there are about 30 types of epilepsy and nearly 40 types of seizure, and it can affect anyone, at any age. When epilepsy happens in infancy, the long-term effects can be devastating, resulting in brain damage, developmental delay and behavioural problems.

Despite what her family has been through, Kelly remains positive, and Millie is a happy five-year-old who has a gang of good friends and a busy social life. She has started at Calaiswood School in Dunferm-line, which provides specialist education for children who need extra support. "I don't know where I'd be without them," says Kelly.

"They pick up on every child's individual needs. Millie's now attending the mainstream part of the school two afternoons a week because the staff realised Millie needs to be around talking peers. And these kids are not intimidated at all – they treat her as one of them."While some families of children with epilepsy struggle to find support, it's clear the Mackenzies have a strong network of people who dote on their daughter.

"It's done so much for us as a family," says Kelly. "Robyn, Millie's big sister, is now trying to work as a supply helper in the school."We were flung into a world of special needs; you have no choice, you know nothing about it and at first you think it's a nightmare. And now it's become a great world and I've met some wonderful people. It makes you re-evaluate what's important in your life."

When brain surgery was suggested, Kelly says she and Mark initially dismissed it immediately. They were terrified at the thought of their daughter undergoing surgery. But, as they learned more about the procedure and spoke to doctors, they realised it might be a wonderful opportunity for Millie.The family went to Great Ormond Street Hospital in London, Europe's largest epilepsy surgery centre, where they met a team of specialists. "They all agreed that, yes, this wee girl has got the potential to learn," says Kelly.

After much soul-searching, the Mackenzies decided it would be selfish not to let Millie undergo the operation. "They've given us a 60% chance of her never having another seizure again," says Kelly, "with a further 20% of greatly reducing them."The family are now preparing for a final appointment with the Great Ormond Street team and are waiting for a date for the operation. "If they were to phone me and say bring her down next week, I'd be so happy," says Kelly.

"That sounds crazy that I'm happy for my daughter to get brain surgery, but I feel this is the start of Millie getting a new chance at life. Epilepsy can be soul-destroying and heart-breaking, but it's not the end of the world."Great Ormond Street Hospital is fundraising for a new clinical building, which will allow it to treat more children in modern facilities.

To learn more or donate, visit or call 0207 239 3000.For more information about epilepsy, contact Epilepsy Scotland at or telephone 0808 800 2200.the facts¥Epilepsy is the most common neurological disorder in childhood.

It affects one in 200 children. Of these, as many as 30% continue to have seizures as well as a range of related disabilities, including learning, physical and emotional difficulties.

In the UK, epilepsy affects more than 75,000 children and young people.

It will cost £15 billion to treat the current UK population of children with epilepsy during their lifetimes. This figure excludes social services and educational costs.


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