Interview 11

Age at interview: 37

Brief Outline: Her 14-month-old daughter was admitted to intensive care in 2002 because of pneumococcal meningitis. Sadly, she died. Her organs were donated to help two other children survive.

Background: Occupation: nurse. Marital status: married. Number of children: 2. Ethnic background: White British.

She realised after her daughter had died how little information there is for parents about rare...

Afterwards, when I was on the Internet, what I remember specifically is, these children, they're vaccinated against x amount of meningitis but people don't mention the rare ones. I mean nobody knew about, you know, the pneumococcal that she had. I mean I think I had heard of it and it makes sense that there could be a pneumococcal. But the education isn't out there about, they're all talking about meningococcal and the rash and the, you know, tumbler test and all that.  

What would be good to be out there? What kind of information? 

Just be aware that it's not, meningitis isn't rash-specific, you know. That's my only thing. Because I've got a friend at work and she's got a toddler who's coming up to the same age and I just said, you know, "They talk about this rash, and they talk about this, and it's not rash-specific, you know." I said, "I'm not scaring you, but just be aware, you know". I don't think that kind of education is out there.

Her daughter was transferred from a local to a city hospital to have tests and treatment in a...

But by Saturday morning she was actually fitting, this was around morning at 7 o'clock. So my husband and I took her straight to casualty at the local hospital, and they were absolutely fantastic. They had every single person around, there were about, you just saw this tiny body on this big bed and there were about ten people around her, all doing something. They were brilliant. And they were not shouting at me, but they were insisting, "Where was the rash? Where was the rash?" And at that point I clicked, "They're thinking meningitis." Because it never crossed my mind. And they controlled the twitching, it was only one-sided twitching, and they were quite concerned it was only one-sided twitching.

So they said they wanted to do a brain scan on her, but because she was so little and she wouldn't keep still they needed to ventilate her. And being a registered nurse I realised what that would entail. And they said that they couldn't care for a child on a ventilator at the local hospital, so they're going to have to transfer her out of that hospital. So I said, "Okay, that's fine."  So I said, "Okay, so where is she going to go?" And they said, "To Hospital A or Hospital B, whoever's got an available bed." I thought, "That's fine, that's fair enough."

'And they were very good because they didn't let, not that they should have let on that something was wrong, but they never let on that anything was wrong. And it was the doctor that, when my husband got there he told us, the doctor took us into a room and she told us. And I remember listening to her but I didn't understand what she said for a good thirty seconds. And then I just said, 'My baby's dead.' And we just couldn't believe it. And they left us alone for a while and then we went back to see her. 

She was stunned at the news of her daughter's death because tests done earlier that day had been...

But when I got to the hospital, she [daughter] wasn't in her bed, she wasn't in her spot. They'd taken her down for another brain scan. And they got back, and they never told me any results of it until my husband got there. And I just stayed with her.  And they were very good because they didn't let, not that they should have let on that something was wrong, but they never let on that anything was wrong. And it was the doctor that, when [my husband] got there he told us, the doctor took us into a room and she told us. And I remember listening to her but I didn't understand what she said for a good thirty seconds. And then I just said, "My baby's dead." And we just couldn't believe it. And they left us alone for a while and then we went back to see her. And I just couldn't believe, you know, it's just, because the brain scan at lunchtime had been fine, the EEG in the afternoon had been fine, and then five hours later she was brain-dead on a machine. 

But I remember as well at 4 o'clock in the morning, going back to 4 o'clock in the morning, I remember then saying, "Can anybody have her organs? Is it, you know, is there any chance that some good can come out of this?" And they said they'd got to find out. And fortunately it was the type of meningitis that you could donate organs from, it wasn't your normal one. And they called in the transplant co-ordinator, and they managed to take her liver and her heart. So now we've got two little girls alive from this. And then we said goodbye to her at about midday. And I told all the family that we were going to donate the organs, which, I mean it didn't matter whether they agreed with it or not because that was going to happen. That was my decision. [My husband] didn't disagree, he just said, "Well, they're no good to her now." So we were actually only in the hospital for about 24 hours. And that was it. 

She and her husband were shocked when they saw their 14-month-old daughter in intensive care,...

And they took her [daughter] down to theatre to ventilate her, and that was a shock seeing her with a tube coming out. But what the most shocking thing was seeing, went in to look, see her and her eyes were taped over, which I knew they did. They [doctors] sat us down and said, "She transferred extremely well and she's settled into the unit." And while we were waiting for that, we had to wait for her to be ready for us to see her. We went in to see her and she just looked so tiny on this big bed. Luckily it wasn't a cot, so you had access to her. And she just had tubes and pipes and everything, which I could understand but my husband, I think he was actually quite shocked.