The parents of a boy who lost his legs to a rare infection are suing a Welsh health board for around £10million to cover his costs of living. Romeo Hadley, 11, was just three when he fell seriously ill during a Cardiff shopping trip and days later had his legs amputated above the knees.
Romeo's parents Katie and Jon, from the Vale of Glamorgan, claim the University Hospital of Wales failed to correctly diagnose his condition for more than 36 hours. If dealt with sooner, the infection would not have taken his legs although he might have lost some toes, the family alleges.
Katie and Jon, both 51, told WalesOnline their son is "the most inspirational, amazing boy that you will ever meet" but they face huge costs to give him as full a life as possible. "[The hospital's] failure cost Romeo his legs and he will forever have to live with the consequences of that," they said. "People understandably think that seeking millions of pounds in compensation is wrong. However, until you have experienced it you do not understand the costs involved in recovery and rehabilitation."
The parents, who have filed a High Court claim against Cardiff and Vale University Health Board, said they received a hurtful backlash from recent tabloid coverage of the case. "When the public think of people suing the NHS, they can be under the impression that the amount awarded is paid by the specific NHS trust out of their budget. This is incorrect," they said, pointing out that health boards pay for membership of a clinical negligence scheme which covers compensation.
Romeo felt a sudden pain in his legs on January 17, 2015, while the family were shopping in an Ikea Superstore. He screamed in agony as a rash spread across his thighs. His parents rushed him to the University Hospital of Wales where he was given morphine. Romeo was recorded as vomiting and had "abnormal" blood test results, according to the writ claiming clinical negligence.
The claim alleges that Romeo was initially treated for Henoch-Schonlein purpura (HSP) which causes small haemorrhages, a widespread rash, and usually gets better in a few weeks without treatment. He was actually suffering from purpura fulminans (PF), a condition which causes skin to die rapidly and affects around one in every 500,000 to one million births.
Romeo's legs were allegedly still moving freely when he was admitted. His parents claim the rash then spread over a larger area of his legs and bottom. Staff were unable to find a pulse below his thighs and surgical cuts were made to release tension in his legs, the writ states.
It adds that two days later Romeo's legs were cold to the touch and a surgeon found that tissue in his legs was dying. On January 20, his legs were amputated through the knees in a ten-hour operation. After three days he had another surgery where his legs were amputated near the top of his thighs. He spent nearly six months in hospital, going through 36 follow-up operations and other invasive procedures, according to the claim.
The parents told WalesOnline: "We have brought the claim because essentially we feel that the hospital failed to correctly diagnose Romeo’s condition for more than 36 hours despite clear signs of purpura fulminans. If you look at the difference between the blotching of the skin in a case of HSP and compare that with PF, you can clearly see the difference.
"Romeo will require prosthetics which currently cost in the region of £70,000 to £100,000 and will need to be changed on average every three years. There are also different prosthetics such as a water limb if you want to swim. Why should Romeo not experience the joy of something so simple such as swimming in the sea that most take for granted?
"If Romeo cannot have a prosthetic because his stumps are too small, he will have to spend his life in a wheelchair. We already know the cost of that and the adaptations we have already had to make to our home so he can move independently around his own home. Doors need to be widened, bed heights changed etc. If we go on holiday Romeo will need a wider seat, more expensive travel insurance, a room adapted for wheelchairs whilst away. That all costs more money."
They added: "As Romeo gets older, he will want to live independently and will need a bungalow which are often more expensive. He will need an adapted home that is also secure and as risk-free as possible. He will have to have specialist equipment to get himself in and out of a bath or shower, in and out of his bed, to answer the door safely, close his curtains, all things most of us do without thinking, but which will cost him more money to just do safely."
The parents said they had hoped the hospital would "admit their mistakes early" and save the family the expense of getting various medical reports. Their solicitor said: "This did not happen and instead [the health board] accused the family of altering the photographs they had taken of the developing dark skin... This accusation was unfounded and very hurtful to the family."
Katie and Jon, who have a daughter called Seren, adopted Romeo in December 2013 after having difficulties conceiving a second child. After Romeo's amputations Katie gave up her job as a mental health nurse and Jon reduced his hours as a dental technician so they could care for him.
"He goes to a mainstream school and he's got amazing friends who just accept him and don't see him as any different," said Katie. Jon added that "football mad" Romeo has a season ticket for Cardiff City and is a huge fan of Man City striker Erling Haaland.
Romeo's friends make sure to include him when they play football and he enjoys being a goalkeeper, but recently he became frustrated that he could not do the same after-school sports activities as other children. He had always refused to try wheelchair sports but recently he gave them a chance because he felt he was missing out. Katie said they have been "the making of him" and he now plays wheelchair versions of basketball, tennis and rugby.
Jon added that Romeo has been used to whispered comments for most of his life but wheelchair sports have boosted his confidence. "Kids stare, adults stare, everybody stares," he said. "Romeo can hear as they go past and say, 'He's got no legs.' When he started doing the tennis and basketball, and seeing all the other kids in chairs, he's really come out of himself."
The family's solicitors Phoenix Legal, who have been preparing the claim for years, said the health board has requested an extension for providing a formal response. The firm has agreed to an extension until February 8.
A spokesperson for Cardiff and Vale University Health Board said: "We appreciate that this is a very sad and difficult situation for Romeo, his family and our staff members. However, due to the ongoing litigation, we are unable to comment any further at this time."
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