Aisha’s story – Bacterial Meningitis

Aisha was 13 years old and a skilled musician. One of those rare children who was truly talented, enough that she was tipped to be the Vanessa May or Nigel Kennedy of the 21st century. A violinist with flair and who played with a passion that showed her deep love of music.

She came home from school one evening feeling unwell and was a little pale. She never told her mother she had come up in a rash earlier in the day. She ate nothing, drank  a few sips of water and fell asleep on the sofa.. Her mother noticed the rash on the back of her daughters hand, rolled up the girls sleeve and saw it extended all the way up her arm.

She had a leaflet regarding meningitis and the rash that sometimes comes with it and fetched a glass from the kitchen. She rolled it over the rash and saw it didn’t blanch from the pressure, it stayed the same purple/red colour. Aisha never stirred even though she was burning up and the glass was cold. Her mother immediately called an ambulance.

A mere 20 minutes later her daughter was in A&E, a tube down her throat to protect her airway and two drips running into her, one for hydration and the other antibiotics. Although the test results weren’t back the doctors knew what the problem was, Aisha had bacterial meningitis.

Within the hour she was in ITU on full ventilatory support, her fingers were swollen and turning a dark blue/purple colour as the infection took hold, the antibiotics were increased but the child’s condition was worsening the rash was on her trunk, left arm and both legs, though not as severely as it was on her right arm.

That evening her parents signed the consent form to amputate Aisha’s right hand. Over the next four days they signed many more consent forms, and on day six they signed the one that would mean their daughter, if she lived would be a quadruple amputee, she had lost both arms and legs to the disease.

For the next seven months Aisha endured dozens of general anaesthetics so that her dressings could be changed. Each time we appeared to take her to theatre she would cry and scream  begging us to leave her in peace and let her die, the pain after the dressing changes was intense even with morphine on board. There were times I admit I thought maybe she was right, but we pressed on anyway.

Her family were amazing. A quiet Muslim family, dad was a car mechanic and mom a cleaner, she had an older brother and a younger sister still in education. They knew by doing this they would be their daughters carers for life, in their culture it was most unlikely she would marry and have children. No man would want a quadruple amputee as a wife. They changed where they worshipped rather than listen to the Imam refer to Aisha as worthless.

Aisha is 31 next month, and each year writes to the team who looked after her during what she refers to as ” the incident” Each letter ends with ” thanks for not listening to me”

She is married now, and the mother of two very beautiful children. Her husband is a doctor and is both Muslim and able bodied. She met him at a friends birthday party, and theirs is a love match rather than an arranged marriage. Aisha is a part-time music teacher and works with amputee children and their families as a counsellor.

So what was it that robbed Aisha if her limbs and is there anything that can be done about it?

Meningitis presents in both viral and bacterial forms. Viral meningitis predominantly affects children and adolescents and is most commonly caused by either Coxsackie virus or Echovirus, both which circulate in schools on a regular basis. It can be caused in some cases by a flare up of herpes, by mumps and measles and very rarely by flaviviruses. In over 99% of cases it is a mild condition from which victims recover without medical treatment and often it is not known that they even had the disease.

In a very tiny number of cases flaviviruses will be the cause and this can lead to encephalitis, a swelling of the brain that does require speedy medical intervention in order to save the patient.

The symptoms of viral meningitis in well over 99% of cases are a sore throat, slight fever, cold like symptoms and a general feeling of being unwell. Flaviviruses that cause viral meningitis cause symptoms more akin to those listed in bacterial meningitis but it does not respond to antibiotics due to its viral nature.

Bacterial meningitis is a fast moving disease that requires medical intervention without delay. It can occur with or without meningococcal septicaemia.

Neisseria meningitidis occurs naturally in the throats of about 10% of the population and only becomes a problem when the amount of the bug carried increases or it is passed to someone who does not carry it and therefore has no immunity to it.

5% of those with bacterial meningitis will die, and 20% of those with meningococcal septicaemia will die, but this rises to over 50% if the patient suffers septic shock before medical aid is available. (UK figures) the contacts of patients in both groups will need antibiotic cover.

The symptoms are many and vary with age and the condition suffered from. I have included a checklist that can be printed to make sure all symptoms are accounted for. This information is taken from the Meningitis Research Trust website.

However, three symptoms that commonly develop early on – often before the more classic symptoms listed later – are:

• Leg pains – which can become severe and prevent a child from standing or walking.
• Cold hands or feet – even if the child has a high temperature.
• Pale, dusky or blue colour of the skin around the lips.

Rash – commonly occurs, but not always

A typical rash is common with meningococcal infection. The rash is red or purple. Small spots develop at first and may occur in groups anywhere on the body. They often grow to become blotchy and look like little bruises. One or two may develop at first, but many may then appear in different parts of the body.

The spots/blotches do not fade when pressed (unlike many other rashes). To check for this place a clear glass firmly on one of the spots or blotches. If the spot/blotch does not fade and you can still see it through the glass, get medical help immediately.

The rash is a sign of septicaemia. It may not occur with meningitis alone. Note: a rash does not occur in all cases of meningitis and septicaemia but can be quite characteristic when it does occur.

Other symptoms that may occur in babies include:

• Excessive crying – often high-pitched or moaning and different to their usual cry.
• Fast breathing, or unusual patterns of breathing.
• Fever – but the baby may not look hot and the skin may look pale or blotchy, or turn blue. The hands and feet may feel cold. The baby may shiver.
• Will not take feeds – sometimes repeated vomiting.
• Being irritable – especially when picked up and handled.
• Drowsiness or sleepiness – does not wake easily.
• A bulging fontanelle sometimes develops. The fontanelle is the soft spot on the baby’s head.
• Jerky movements may occur and the body may appear stiff. Sometimes the opposite occurs and the body appears quite floppy. Convulsions (fits) sometimes develop.

Other symptoms that may occur in older children and adults include:

• Fever and shivering – however, the hands and feet often feel cold.
• Stiff neck – cannot bend the neck forward.
• Headache – which can become severe.
• Fast breathing.
• Aches and pains in muscles or joints – the pains can become quite severe.
• The skin may look pale or blotchy, or turn blue.
• Dislike of bright lights – will shut eyes and turn away from the light.
• Drowsiness or confusion – may appear vacant.
• Repeated vomiting. Sometimes abdominal pain and diarrhoea.

The course of symptoms

The symptoms often develop quickly, over a few hours or so. The symptoms can occur in any order, and not all may occur. Sometimes symptoms develop more slowly, over a few days. The symptoms may suggest a less serious illness at first. For example, fever, headaches, and vomiting are common with many viral illnesses such as flu. Therefore, even if you think it was flu to start with, if symptoms become worse then it may be meningitis or septicaemia.

Examples of meningococcal septicaemia rash:

Lizzie