Emma's story

Emma was three years old when she became very sick with a severe headache and a high fever. When she became floppy and started fitting uncontrollably, Emma’s mum called an ambulance. She was rushed to hospital with suspected meningitis, and then transferred to a Paediatric Intensive Care Unit (PICU) by a mobile intensive care team.

Emma was confused and delirious and drifting in and out of consciousness by the time we got to hospital. To control the mounting pressure on her brain they put her on an artificial breathing machine and hooked up tubes and wires to administer drugs. The seizures were very frightening for us and we thought they would never stop. Emma spent 26 days in PICU and the doctors told us to prepare for the worst.
Emma’s mother

I thought she was going to die. And then, when it went on for so long, I said my good-byes, because the Emma I gave birth to did die – she is not the same child I had. We love her dearly, but it is very difficult and sad to deal with a severely disabled child. She can’t communicate and we can’t communicate with her as we used to. The sense of loss is great for us as parents – she is never going to be able to do all the things that she was supposed to.

Outpatient appointments

When Emma initially returned home, she was in pain and on constant medication. The extent of her disabilities continued to cause general health problems throughout her life. After discharge from hospital, Emma had an intensive course of hospital outpatient appointments with:

• A paediatrician
• A neurologist
• A neurosurgeon
• An orthopaedic surgeon
• An orthotist
• An ophthalmologist

During this first year, Emma was constantly in and out of hospital, and there was frequent multi-professional follow-up until school age. Gradually this extended to six-monthly or yearly appointments until age 16.

From hospital, Emma was referred to a community paediatrician at a child development centre. Specialist community physiotherapists, occupational therapists and speech and language therapists all became a regular part of Emma’s life.

Ochlear implantation

Emma was left profoundly deaf, and was urgently referred for bilateral cochlear implantation. Cochlear implants have to be inserted without delay to be successful after meningitis. Following the initial implant operation, she became a lifelong outpatient of the implant centre for regular care and technical support.

Epilepsy management

Emma left hospital with epilepsy, managed with medication, but the seizures got worse. By the age of 6, the medication could no longer control them. After a review, she was prescribed more expensive drugs that had to be given several times a day.

A brain scan then revealed that one side of Emma’s brain had wasted away post-meningitis and this damaged area of the brain was the source of her seizures.

At age 10, she had an operation to disconnect the damaged part of her brain to reduce the severity of her seizures. The operation was a success and she was able to return to her original epilepsy medication.

Epilepsy management

Emma left hospital with epilepsy, managed with medication, but the seizures got worse. By the age of 6, the medication could no longer control them. After a review, she was prescribed more expensive drugs that had to be given several times a day.

A brain scan then revealed that one side of Emma’s brain had wasted away post-meningitis and this damaged area of the brain was the source of her seizures.

At age 10, she had an operation to disconnect the damaged part of her brain to reduce the severity of her seizures. The operation was a success and she was able to return to her original epilepsy medication.

Shunt revision surgery

Emma developed hydrocephalus (water on the brain) due to her illness. For the rest of her life, she needed a shunt to drain away excess fluid. Like any other piece of equipment, shunts can break down. They can also become blocked, or infected. Throughout her lifetime, Emma had numerous operations for shunt revision, and twice needed intensive care after emergencies due to shunt blockage.

Specialist equipment provision

Emma had a wheelchair from the day she left hospital, and although she learned to walk for short distances, she was predominantly a wheelchair user. Throughout her life, her chair needed upgrading and maintenance.

She gradually learned to manage her posture and movements with physiotherapy, but at first she needed a full body lycra suit to help with this. She also had other specialist equipment to help with mobility, day-to-day activities and posture, including a standing frame, specialist seating, a therapy bench, walkers, crutches, specialist toys and eventually a communication aid.

Additional educational

The costs of educating Emma were higher than educating a child without disabilities. Because of her severe learning impairment and physical disabilities she had a statement of special educational needs, reviewed annually by the school and local authority. Throughout her early school years Emma required one-to-one support because of her severe epilepsy. She also had specialised transport to and from her special school up to age 19.

Direct/indirect costs and benefits

After Emma became ill, her mum gave up her job to become a full-time carer. Her father was on an average income of just over £25,000 p.a., so the family became heavily reliant upon state support. Due to the severity of Emma’s disabilities, she continued to live at home with her parents. Their home needed extensive adaptations to accommodate her. The family also had financial help to adapt their car, and replaced it every five years under the government’s specialised vehicles fund.

Direct Payments funded home help for three hours a day, five days a week. In order to claim this benefit the family had regular social care assessment, home visits and reviews. As respite for the family, beyond 7 years of age, Emma spent one weekend every two months in a specialist residential unit. By the age of 40, Emma’s parents had become too elderly and frail to care for her, and she had to move into full-time residential care.

Meningitis changed Emma and her family’s lives forever. None of the aspirations her parents had for her could be realised. They could not invest their time equally between their two children due to the level of care that Emma required. Her parents never saw her leave home and build a life for herself. Due to the injuries caused by childhood bacterial meningitis, Emma only survived until age 50.

Individuals with severe disabilities may have reduced life expectancy due to general ill health from inactivity and the increased risk of contracting pneumonia and other infections associated with their disability.
Paediatric Infectious Disease specialist