Holly Loach sits in her high chair. Her eyes burn with curiosity, her fingers are everywhere, but she is silent. I say hello, and there is no response. A few weeks ago Holly was as loud as they come, says her mother, Hannah. Back then she sang, she screamed, she babbled away. A few weeks - a lifetime.
It was August bank holiday Monday when 16-month-old Holly became sick. She was hot, sleepy, lacklustre. "She was just lying on her back not moving, which I had never seen before. She looked blank, spaced out," says her mother. When Holly went back to bed an hour later Hannah knew something was up.
The GP's surgery was shut, so Hannah took her daughter to Seldoc, the emergency medical practice for south-east London. She was told that they had seen lots of children with the same virus, and that she would get through it. Hannah was worried because Holly wasn't eating or drinking. The doctor said that food wasn't important as long as she was taking fluids. They went home. Holly continued to refuse liquid. Hannah and her partner, Mike, took her to the GP on the Tuesday morning. The doctor examined the little girl's ears, eyes and throat, prescribed paracetamol suppositories, and fitted this advice neatly into a five-minute appointment slot.
By Tuesday evening, there was no change. "She was like a ball of fire," says Mike. The surgery was closed, so Hannah returned to Seldoc where another doctor told her that she had nothing to worry about, but she would refer her to King's College Hospital just to put her mind at rest.
As it turned out, there was nothing soothing about the visit to King's: only a series of increasingly distressing, infuriating, and perplexing, delays. Hannah had been told to go straight to the ward, so by the time she was sent back to casualty, another hour had been wasted. Despite Hannah's obvious concern, she was told to take a number and that she would have to wait to see a nurse. "There were only four ahead of us so I thought that would be fine, but we sat waiting for an hour and 20 minutes. I kept going over and saying, 'I'm really worried,' but I was just told to wait my turn." After seeing the assessment nurse they waited for the paediatrician. "Eventually someone came and started taking notes, and after about 10 or 15 questions I realised she was working from the wrong notes. She said, 'So Holly's four months old?' and I said no."
The doctor told Hannah they would test Holly's urine. Hannah asked how, given that Holly had not had anything to drink for two days - they were then left in the cubicle for the best part of two hours, by which time it was midnight.
By now Hannah was panicking. She went over to a doctor, waited until she had finished making her notes and asked if she could please have a word. "She just completely blanked me. This was the doctor we had seen before. She stared at the wall, rolling her eyes."
Hannah returned to sit with Holly.
A few minutes later, another doctor examined Holly, and said she was happy for her to go home. "I said, 'What about the temperature?' and she said, 'I can give you some Nurofen which is a bit stronger for children, but I'm pretty sure it's a virus that she's sleeping off.'"
Hannah told the doctor that Holly had been asleep since Monday lunchtime - it was now 1.30am on Tuesday night. "The doctor asked me if she is usually asleep at this time of night. I said, 'Well yes, usually,' and she said, 'I'd still expect her to be asleep at this time, so you know, don't worry.'" The doctor wrote a prescription for Nurofen and left it on a chair. Another half hour passed before a nurse found it for them.
"The ironic thing is that we couldn't wait to get out of there," Mike says. "You get there, think something's going to happen, and when it doesn't you're just glad to get out." What astonished Mike throughout was the way the doctors refused to listen to what they had to say about Holly. "As parents, you know when something isn't quite right - that's why we'd seen four doctors in two days - and that should be taken into account. But it wasn't in our case."
On Wednesday morning Holly didn't wake up. Hannah brought her down to lie on the sofa, and tried her with a different bottle but she would not take anything.
Hannah's cigarette is shaking in her hand as she tells the story. She is constantly on the verge of tears. She has played back every event so many times, as if this time things might work out differently. "I went to the bloody gym in the afternoon."
"But she was with me," Mike says, gently.
"I know, but I don't know why I went. I had an appointment for the induction and didn't want to go, but I just wanted to get out of the house. And when I came back you still hadn't managed to give her anything to drink, and I rang up the doctor, and asked if he could come round to the house."
But he was too busy, and told her that the walk to the surgery might wake Holly up.
Hannah asked if it could be anything insidious and, like the other doctors, this one said no. He was sure that Holly was sleeping off a virus, but he referred her back to King's anyway - again, just in case. King's wouldn't take her because they were too busy. Eventually St Thomas's agreed to see her.
"Thankfully, they took her in straight away, and put a sticker on her saying 'unwell baby'," Hannah says. They put her on a drip, took blood tests, and said Holly would have to stay the night while they did a lumbar puncture. They finally took some urine by inserting a needle into her bladder.
"They said to get some sleep, but obviously I couldn't. I was just watching her. She looked bloody awful. Then her face just went all blotchy and she was having difficulty breathing. I ran to get the doctor."
Doctors, nurses and porters all came running. It was decided that Holly should be taken to the intensive care department at Guy's hospital because the equipment was better. But even there, there were delays. The CT scanner wasn't working and the theatre at St Thomas's had been locked for the night.
Hannah and her mother were left in a corridor outside the surgery. She was told they would have to wait for 10-15 minutes. The doctor returned three hours later. "He was walking very slowly, hands in his pockets, looking at the floor. He had another female doctor with him and a nurse. I just knew he wasn't going to tell me what I wanted to hear."
The doctor told her that Holly had meningitis. "He said, were there any questions. Of course, I couldn't think of anything. But mum said, 'Is she going to be all right?' He just said, 'There's a possibility she'll recover.' We sat there not looking at each other."
That Thursday morning, Holly was transferred to Guy's where Hannah says Holly was looked after "brilliantly". The staff explained what the side effects could be, but added that they were rare. "I thought she would go back to being like a baby, take a long time to recover but I assumed she'd be OK. But very soon after she woke up we knew she couldn't hear anything. 'Unlucky' was the word they used."
Both Hannah and Mike are musicians. Hannah's mother, Lesley, says this makes it even more difficult for them to cope with Holly's deafness. Holly used to love it when Mike played simple tunes for her on his saxophone.
The word "meningitis" had crossed Hannah's mind - after all, it is every parent's worst fear - but of course she had put her faith in the medical profession. "I feel terrible, that I didn't actually use that specific word right from the beginning, just stand up and shout."
But how could she have done any more? She went to the doctor several times. Meningitis is often hard to detect in babies, but Hannah felt that the doctor should have been able to diagnose it on examining Holly. "If I had just made more fuss... but I'm not that kind of person. You just think, if I had made more fuss, they might have caught it earlier... it might have made a difference."
The doctors say that the only hope for Holly's hearing is a cochlear implant, but it is too early to say whether that will work. Holly is also expected to have learning difficulties due to brain damage.
Hannah kisses her elder daughter, Martha, goodbye as she heads off for nursery with a big smile. "The worst thing is knowing that Holly is not going to grow up like Martha." She talks about the way they used to sing and dance together.
The doctors at Guy's hospital told Hannah and Mike how advanced Holly was for her age. She already had a vocabulary of half a dozen words. These have disappeared. She is already retreating into a world of silence. "The way she is getting quieter and quieter is terrifying," says Hannah.
Yesterday the King's College Hospital NHS Trust said that it would like to apologise "for the distress felt by the parents of Holly Loach" - but the hospital did not think that it was unreasonable that she had been sent home before being diagnosed as having meningitis. "Following concerns raised by Holly's parents, the trust has reviewed Holly's care and concluded that the clinical decision was appropriate for the symptoms that she was showing at the time. A diagnosis of meningitis was considered within that clinical decision."
• The National Meningitis Trust has a 24-hour helpline: 0800 6000 800.
