The staff are all so good with her

Charlotte's injuries have been made easier to bear by Sick Kids, says mum

AS baby Charlotte Farrell enjoys a cuddle from her mother Susan, she pays little heed to the terrible brain injuries that have cast a shadow over her short life.

The 17-month-old rarely cries and doesn't even fuss when the four types of drugs she has to have every day are injected into her stomach.

And although she faces daily battles with up to 40 epileptic seizures, she remains a cheerful, albeit occasionally mischievous, baby girl.

Susan, 34, knows life will always be a struggle for Charlotte, who is blind and can only take fluids through her nose. She also faces an operation to crack open her skull to ease the pressure on her brain.

But Susan takes each day at a time and focuses on the things she can change, rather than the things she can't.

As a result of her condition Charlotte is forced to spend extended periods of time at the Sick Kids, and Susan is desperate for the hospital's neurology and neurosciences department to remain in Edinburgh.

"Having to go to Glasgow, to a specialist unit there, would be a nightmare," says Susan of the threat to the department and its possible relocation. "Everyone at the Sick Kids knows Charlotte and takes such good care of her. I can phone them up whenever I've got a problem and the consultant is so good with her."

Charlotte's illness is an ordeal the family never expected.

The final ten weeks of Susan's pregnancy were marred by preeclampsia, a condition which causes high blood pressure and severe swelling – her feet changed from a size three to a size seven.

She was induced on a Monday in August 2006 but did not give birth until three days later.

And when she was born, medical staff immediately feared the worst and rushed Charlotte to an intensive care unit instead of into her mother's expectant arms.

"She weighed 6lbs, but her head was small," recalls Susan, who has given up her job as a personal assistant to look after Charlotte full time. "Straight away, they were really quite concerned. Their reaction worried me. I had just delivered and they were taking her down to intensive care.

"A couple of hours later, after she had been settled, I was taken down. I just wanted to make sure she was all right.

"They said her head was too small. I said, 'Couldn't that just be Charlotte?' I think I was in denial. They said, 'No, she's completely off the scale'."

Off the scale meant that Charlotte's head was significantly smaller than the smallest one per cent of healthy babies.

She was also suffering from Primary Microcephalus, an extremely rare condition that affects just one child in every 600,000, with only 90 known cases in the UK.

In the intensive care unit, Susan, helpless, could only watch as doctors took measurements of her baby's eyes, finding reduced optic nerves in both.

Charlotte would soon be certified blind, although she appears to be able to sense light and shadow and see shapes, and will certainly attend a blind school rather than mainstream education.

Her condition also means that although she can eat solids, she must take fluids through her nose because, if she drank normally, there is a risk that it would enter her lungs.

Even as Susan took her new baby out of the Simpson's Maternity Unit at the Edinburgh Royal Infirmary, she still knew little about what lay in store.

She knew there was a chance Charlotte could develop epilepsy but nothing could prepare her for the sight of her daughter shaking uncontrollably in front of her.

She says: "At first she could have 30 or 40 seizures a day. Some are mild and they have lessened due to medication, but still.

"Her whole body shakes, her eyes flicker. It's very hard to watch but you have to detach yourself because the more distressed you get, the more distressed she gets and that affects the seizure and it goes on for longer.

"You have to get upset afterwards. You have to be clinical when you are dealing with it 24 hours a day, seven days a week.

"But you do get upset and you get depressed. You worry about the future, but it's pointless dwelling when you don't know what's going to happen."

Charlotte's visits to the hospital became so frequent, Susan eventually sold the family home in Livingston and moved to her mother's house at the Inch to be closer to the Sick Kids

She adds: "Her consultant has been great from the start. He just said, 'If she gets epilepsy we will deal with epilepsy. If she gets cerebral palsy we will deal with cerebral palsy'."

With support from the consultant, the Sick Kids nurses, and her mum, Susan and Charlotte have been able to live as normal a life as possible.

"Initially, you are devastated," says Susan. "You think you are going to have a perfectly healthy child, then you get told that she is going to be severely disabled. But to what extent, until she starts reaching milestones, it is impossible to tell. She is 17 months old although she's like a three-month-old baby but she's starting to try to sit up and she's smiling.

"She's starting to understand things a bit more now. If I say, 'Do you want to go to your gran?' she pulls herself to my mum."

Because she watches over Charlotte so closely, Susan believes she has built up an even closer bond than most new mothers have with their children. She knows every quirk of her daughter's personality inside out.

"She's a really contented baby, although she's got quite a bad attitude," Susan admits, smiling.

"She lets you know if she doesn't want to do something but she very rarely cries – only when she is in a lot of pain."

Although Susan has learned to put most concerns out of her mind, there is one cloud on the horizon that she struggles to ignore. There is a risk that Charlotte's skull will stop growing before her brain does, leaving surgeons with no option but to operate.

Although it has not been set out which services would be lost to Edinburgh if children's neurology is centralised away from the Capital, such complicated operations would be most likely to be carried out elsewhere.

Susan says: "We don't know if she's getting headaches but we try to look out for it. At the moment her skull is still growing like a normal baby's would but there is a small chance of it stopping.

"If that happens she might need a craniotomy, where they would crack open the skull to alleviate pressure on the brain."

If such an operation is required, Susan and Charlotte will be hoping the world-class neurology department and its consultant are still at the Sick Kids to carry it out.


CAUSE FOR CONCERN

THE Scottish Government is to decide whether to centralise key children's services in the next few months.

If it centralises specialist cancer, neurology and neurosciences in one centre, Edinburgh could lose both to Glasgow.

Medics, charities, patients and politicians have all opposed such a move, which would lead to some patients having to travel out of the city for care.

More than 1000 people have signed a petition against centralisation of services.

The Scottish Government has stressed it has made no final decision and its priority will be ensuring children receive the best treatment.

NHS Lothian has said it is hopeful the new Sick Kids Hospital will contain the same expertise and treatments as the present one.