Peter’s story

Peter was 12 months old when his mum took him to the GP with a fever and rash. He had been very sick and she knew something was terribly wrong. He was rushed to hospital by ambulance with suspected meningococcal disease, then transferred to a Paediatric Intensive Care Unit (PICU) by mobile intensive care team.

By the time we got to hospital, the few bruise-like marks I had seen now covered him completely – his skin was turning black in front of our eyes. He was barely recognisable, pumped full of fluid, his whole body swelled grotesquely. We felt so helpless and could only sit and watch our baby battle for his life as a small army of doctors and nurses rushed around.
Peter's mother

In PICU he was aggressively managed to combat multiple organ failure, and spent the next month fighting for his life. He had severe septic shock, acute respiratory distress syndrome and was on dialysis for kidney failure.

His heart stopped twice, he had catastrophic blood-clotting and, starved of oxygen-laden blood, Peter's legs and one arm turned black as the tissue died, resulting in gangrene. It also destroyed 60% of his skin. Finally Peter was transferred to a paediatric ward where he spent five months.

Both legs were amputated above the knee and one arm below the elbow and he returned to theatre continually for removal of dead skin, bone trimming and dressing changes under anaesthetic. He also underwent various skin grafting operations. He was in hospital for six months.

Outpatient appointments

At the age of 18 months Peter was discharged from hospital but became a lifelong outpatient of a Disablement Service Centre which provided prosthetic limbs. He was seen regularly by a team consisting of:

• A consultant in rehabilitation medicine
• A prosthetist
• A physiotherapist
• An occupational therapist
• A counsellor

He had quarterly follow-ups with the hospital paediatrician and appointments with plastic and orthopaedic surgeons, who checked his scars didn't interfere with his movement as he grew, and for bones growing through his amputation stumps.

Peter's progress was long and slow, with endless rehabilitation, referrals and specialist appointments. Barely a week went by without some form of medical appointment. He needed intensive follow up until he stopped growing at about 18, and continued to need specialist management for the rest of his life.

Prosthetic provision

Peter's early years were dominated by learning how to use his prosthetic legs and arm. To protect fragile skin on his stumps he was fitted with thick silicon liners which needed replacing at least twice a year. He was also provided with a manual and power wheelchair for when he was too tired to walk.

He had many types of prosthetics for different functions which became more sophisticated as he grew. When Peter got a new type of leg or arm, it took numerous sessions to help him learn to use the limb. For sport or exercise he needed specialist limbs built.

Over time his prosthetic legs were extended and larger hands and feet provided to keep up with the growth of the rest of his body.

Community health

Community therapists played a key role in Peter's rehabilitation, providing a programme of exercises to improve his posture, strength and dexterity as well as supporting his parents and teachers. Peter had visits from a community therapist once a fortnight until the age of four, monthly until age 13 and once a term thereafter.

Specialist equipment

As soon as he left hospital, Peter got elbow splints to help prevent contractures that could restrict movement of his arms, and a pressure suit to help reduce skin scarring.

He needed a therapy bench at home and school for physiotherapy exercises. He had a standing frame at home to get him used to weight bearing on his legs and improve his posture. He also got a specially adapted walker with a seat and eventually, as he became better at walking with prosthetics, some specially adapted crutches.

Corrective surgery

Peter underwent multiple operations throughout his childhood. The bones in his amputation stumps grew faster than the surrounding tissue and he had surgery to trim his bones and improve skin coverage of his stumps. The skin on one of Peter's legs was in such bad condition that it needed replacing with healthy skin from his back. In order to harvest enough skin for the operation, expanders were inserted to stretch his healthy skin to a large enough size for the skin graft. Peter returned to hospital for surgery eight times until he finally stopped growing.

Behavioural problems

Around the time he started school, Peter began to display difficult behaviour, possibly due to the physical effects of the illness on his brain or to the trauma of his illness and stress of living with disabilities. He was referred by the community paediatrician to CAMHS (child and adolescent mental health service) for a psychiatric assessment. Peter saw a psychiatrist every six months while at school, and took medication to help his behaviour. Peter's parents also had an intensive course of sessions in a parenting group.

Additional educational costs

Peter's school life was not straightforward. The costs of his education were higher due to his requirements. Peter needed:

• A learning assistant to help him carry out daily physio and occupational therapy exercises and day to day activities
• Specialised transport to take him to and from school
• Special Educational Needs (SEN) statement and annual assessments Specialised equipment and building work to the school to accommodate his needs including a specially adapted bathroom with ceiling hoist, grab rail, closimat toilet and adapted sink.

Direct/indirect costs and benefits

Peter's illness and resulting disabilities affected not only his life, but that of his family forever. His parents became carers, with his mum giving up a successful career as a buyer for a major retailer to look after her son, as well as caring for Peter's sister.

The family became reliant upon state support, claiming Carer's Allowance and specialised vehicle fund as well as a state grant to have their home extensively adapted.

Since Peter's illness our house is a totally different place. The front half of downstairs has been entirely rebuilt so Peter has a ground-floor bedroom and bathroom with hoists, special toilet and shower. There are ramps in front of the house, a stair lift, and all the doors have been widened for the wheelchair. When he's a bit older we'll adapt the kitchen and improve access to the garden. And I don't think I could ever have imagined how much equipment he needs –wheelchairs, his frame and crocodile walker, exercise bench, and cupboards full of arms and legs he's not using. Still, the disruption to our house is nothing compared to the disruption to our lives, and we've still got Peter – that's the most important thing. Peter's mother

Due to the severity of Peter's disabilities, he is entitled to Disability Living Allowance, Cold Weather Allowance, Mobility Allowance and additional tax credits.

At the age of 18 he went to college and completed a three year course. As a disabled student he required extra help and specialist equipment. After his course, he was fortunate enough to secure a part-time job he could do from home but remained on a low income and was entitled to state support. By then Peter had moved into his own home, specially adapted with a disabled facilities grant. He also received some help with cooking, shopping for food and other tasks which remained beyond him for the rest of his life.

For Peter and his family life changed forever on 28 January 2010. Little did his family realise how this disease would affect them and completely alter their expectations of the future. The hard part really started when Peter left hospital – he and his family had to learn to live with the consequences of the disease. Peter spent the rest of his life recovering from meningitis and septicaemia.