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Home News & info Old Counting the cost 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.
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
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.
Total cost : £151,651
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:
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.
Outpatient appointments lifelong costs : £55,046
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.
Prosthetic provision lifelong costs. : £655,024
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.
Community health lifelong costs : £12,925
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.
Specialist equipment lifelong costs : £27,630
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.
Corrective surgery lifelong costs : £33,045
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
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.
Behavioural problems lifelong costs : £16,601
Peter's school life was not straightforward. The costs of his education were higher due to his requirements. Peter needed:
Total cost : £206,769
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
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
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.
Direct social costs : £533,449
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.
Total cost : £1,046,410
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©2017Meningitis Research FoundationOffices: Belfast, Bristol, Dublin, Edinburgh, Blantyre in Malawi.A charity registered in England and Wales no 1091105, in Scotland no SC037586, & in Ireland 20034368A company limited by guarantee, registered in England no 4367866Registered Office: Newminster House, 27-29 Baldwin Street, Bristol, BS1 1LT UK