Fight to save little girl's life

Less than three months ago Sharon and David Slater from Duncastle Park, were enjoying idyllic family life when their youngest of two daughters, Millie, aged five, came home from school with a severe headache.

When it re-occurred and she showed no improvement they took her to their doctor and then to hospital, setting in motion a 10-week nightmare of hospital visits during which brave little Millie had to undergo four lumbar punctures and an operation to have a shunt put into her head to relieve the pressure that built to dangerous levels around her brain.

Such was the extreme nature of what Millie suffered, and so rare was her illness, that her parents believe that she may be only the second person in the world to have developed Acute Disseminated Encephalomyelitis with meningitis, having been initially treated for tuberculosis meningitis. Her illness was complicated by optic neuritis, and the little girl will be on medication for about another year. They also revealed that doctors have now compiled her notes and taken video documentation of her illness which will form the basis of a case study at a high-powered medical conference in Dubrovnik in Croatia in the near future.

With test results still outstanding, no one, as yet, has been fully able to fully define exactly what happened to make Millie so ill or how establish how she contracted the complicated illness in the first place.

"Her dad collected her from school at Ebrington. It was a Friday evening and she was complaining about having a really sore head and she slept for most of the evening," said Sharon, describing how the trauma began.

It was uncharacteristic behaviour for the little girl, and initially was put down to a migraine headache - something her father also suffers from. But worse was to come in less than a week.

"She was always very healthy up until that day," said Sharon, adding: "We just thought it was a cold coming on, but she was fine all that week and continued going to school until the following Friday, when she again complained of having a headache. Then she started to vomit, so on the Monday I took her to see our GP and he said it was a virus and it would pass."

Millie was taken home with the instruction to keep her warm. Although it was since established that Millie had meningitis, Sharon and David were eager to point out that at no time did Millie have a rash, and this was why they wanted to highlight what happened.

"We want to let parents know that there does not always be a rash," said Sharon, while David said: "My wife phoned the meningitis helpline and they sent out a nurse from the Meningitis Trust and she told me whenever you see the blotches because there are several types of meningitis, and one of them is meningococcal and part of that is septicaemia and that is what causes the marks on the skin. We just want to warn parents that you don't always get a rash with every strain of meningitis."

By the Wednesday night Millie was distressed, crying and in pain. Her parents took her to Altnagelvin, where she was diagnosed with a virus and it would take a few days to clear. By Thursday Millie was still poorly and was vomiting, and the couple took their little girl back to the GP and told him they were not happy with her condition.

"I just had a feeling she was very unwell and he said he would send her up to Ward 6. They did blood tests and her white blood count was a bit up but nothing to worry about and they said they would keep her overnight, but she was there a full week and they were treating her for migraine headaches. We had asked all the questions; if it was meningitis or it it was a tumor, and they did a CT scan but it was clear. They tested her eyes and they found she had pressure in the pupils of her eyes and they said she would have to have a lumbar puncture. They made arrangements for her to be sent to the Royal Victoria on the Friday morning and we took her in our car. She cried the whole way," said Sharon.

They said it was a few weeks before they were told it was meningitis. In the meantime hospital staff thought tumors might be the cause and a full MRI scan was done along with another lumbar puncture.

"It was a very rare form of meningitis she had and she had four lumbar punctures in the one week. They discovered that there was a lot of pressure on her brain and they eased the pressure when they did the lumbar puncture. She was fine for about three days and then the headaches and the vomiting started again. The pressure reading was 52, where 15 to 22 is normal. They relieved the pressure and on the Friday she had to go for another lumbar puncutre and her pressure was up to 62 that time."

She continued to deteriorate and later that night lost the sight in her right eye and she was rushed into theatre to have a shunt put in. The shunt was kept in place for 10 days and tests had still not shown what wrong.

"She was slipping away from us at that stage. She was very ill, and they decided to treat her for TB meningitis," said Sharon.

By this stage Millie could not move any part of her body due to pain. She did not want to be moved because she was so sore and suffered a debilitating bout of diarrhoea. Her bladder function stopped and she was catheterised. After about nine weeks of hospital treatment and examination Sharon phoned the Meningitis Trust.

The extent of her illness meant Millie had to be taught to walk again and endured intense physio.

"We came home but I knew she wasn't right, she was regressing and her behaviour was out of character. When we got her home she took a severe rash all over her body and I phoned the consultant in the Royal and they said to take her to Altnagelvin. While she was back at Altnagelvin she took a severe squint in her eye and her eye turned in to her nose and she was referred back to the Royal Victoria," she said.

This time they made the journey in an ambulance, at speed, with sirens. Another brain scan showed she had a very rare illness.

"It is very rare and there is only one other documented case in the world, because she took optic neuritis and a rare brain disorder Acute Disseminated Encephalomyelitis. It is something that manifests four weeks after meningitis, but because she took optic neuritis it is very rare. The doctors in the Royal could only find one documented case in the world and were in contact with a specialist in Australia in a bid to try and treat Millie.

Describing the family's ordeal as "absolutely horrendous" Sharon is keen to thank the hospital and medical staff and paid tribute to friends and family who rallied round taking care of their other daughter, visiting, and keeping her and David supplied with fresh clothing. She said they were also grateful for all the prayers, cards and kindness they received.

Revealing Millie's case, with video documentation, will be discussed at an international conference for neurological illness and diseases in Dubrovnik soon, David said: "If we can help others to diagnose it earlier then it would be great if something positive came out of all this".