A blunder to make you weep: This little boy lost his legs – purely because of a horrific NHS mix-up. It’s a story of courage to leave you humbled

a mischievous smile on his face, Reuben wobbles ever so slightly as he paddles out to sea, testing to see how far he can go before his mother calls him back to the beach.

In most ways, Reuben – or Captain Chaos, as she affectionately calls him – is just like any other bright and energetic three-year-old.

But his prosthetic legs and, on closer inspection, the stumps on his hands where seven of his fingers should be are a constant reminder that he is quite unlike other boys of his age.

In some ways, he is lucky to be here at all, nearly losing his life after doctors failed to identify toxic shock syndrome, a rare but life-threatening bacterial infection.

But Louise Harvey-Smith’s sheer joy, which shows clearly on her face as she watches her son playing on the beach near their Suffolk home, is tempered with a lasting and understandable bitterness that she knows might never end.

Because her son’s disabilities are the result of a catastrophic error on the hospital’s part, one that could simply – and tragically – have been avoided.

Medics she describes as ‘arrogant’ refused to listen to her concerns, she says. More important, they ignored the advice they had been given from some of the country’s leading experts and instead sent seriously ill Reuben home with a diagnosis of nothing more than ‘tonsillitis’.

Ipswich Hospital has already admitted liability, has issued an ‘unreserved apology’ to the family and has made an interim payment of £50,000 for prosthetics. Now Louise is suing, with a final award likely to reach £4 million.

The one thing that holds mother and son together is an extraordinary love of life, seen from the moment Reuben came round from his operation and said ‘Want mummy cuddles’ before asking: ‘Where’s my dinner?’

As Louise recalls all too clearly: ‘The first time he saw that his legs had been cut off from just below his knees, he just said, “Poorly feet gone, get new ones.” ’

It is a story that began with a simple domestic mishap. Little more than a year ago, in July 2015, Reuben had burnt his chest in an accident. He had been tumbling on the floor with his older brother Harry when – with Louise momentarily distracted – they knocked over the iron she had been using earlier.

Louise, 41, a senior civil servant at the Home Office, rushed her son to A&E at Ipswich Hospital. There, Reuben was given morphine and had his burn dressed. She continues: ‘Once he had the medication, Reuben seemed fine. They had given him a little bottle of bubbles and he was blowing them at the doctors and generally racing around. I was upset about the burn but didn’t think it was overly bad.’

Doctors told Louise there could be a possibility of third-degree burns affecting the deeper tissue on one patch of the wound. In normal circumstances, they would have referred Reuben to Chelmsford specialist burns unit, but it was closed because of an infection.

Instead, they told Louise to take her son to the burns unit at the Chelsea and Westminster Hospital in London, some 80 miles away, the following morning. There, Reuben’s burn was redressed and he was given an appointment at the Chelmsford unit four days later.

‘At this stage there was no need for worry,’ Louise recalls, ‘although I was given a list of symptoms to look out for, such as a rash, vomiting and fever that could indicate sepsis [blood poisoning].’

He had developed a rash and Louise thought he seemed lethargic and drowsy. Since Chelsea and Westminster had told her to contact them if he showed such symptoms, she phoned immediately. Doctors there were concerned an infection had set in at the site of the burn and told her to take him immediately to Ipswich A&E.

‘The doctors had stressed several times that I should tell doctors there to phone them and that was at the forefront of my mind as I drove to hospital.Determined: Reuben has learned to walk with his prosthetic legs

‘Reuben was vomiting on the way and it was the first thing I told the staff when I got there. Yet in the four hours we were there, they just monitored his temperature and gave him Calpol.

‘They told me they thought it was tonsillitis. I kept asking if they had called the doctors at Chelsea and Westminster but I was just dismissed as a nuisance. All because staff at Ipswich were too arrogant to accept that sepsis was a distinct possibility. One doctor told me 36 hours wasn’t long enough for toxic shock syndrome to set in. Even when Reuben’s heart rate rose to 190 beats per minute, they said it was because he was scared of the doctors.’

Despite Louise’s dogged persistence that something was terribly wrong, doctors at the hospital then made a fateful decision: disastrously, they sent Reuben home. As a high-flying director at the Home Office, Louise rarely takes time off work, but this time she did, so concerned was she about Reuben’s condition.

Louise has two elder sons, Will, 22, and Harry, 12, from her relationship with her ex-husband. When Reuben’s father – who no longer lives with the family – paid a visit the day after the youngster had been sent home, the two adults were shocked to see Reuben was unsteady on his feet.

Louise immediately called Chelsea and Westminster, where doctors urged her to take him back to Ipswich Hospital as he was showing all the signs of toxic shock syndrome. Reuben was taken straight into the resuscitation unit. ‘When they warned me that I had a very, very sick little boy, I was terrified,’ Louise says. ‘When I got to see him, he was on fluid and drug drips and his hands and feet were freezing – yet he had had the same symptoms when I had brought him in the day before.’

What started with a burn from a household iron was now a desperate race to save Reuben’s life. He was taken by ambulance to the intensive care unit at St Mary’s Hospital in Paddington, a journey Louise describes as ‘three hours of pure hell’. ‘All I could think of was that Reuben could die. When we arrived, they told me the next 24 hours were crucial. I think I prayed all the way through every one of them.’

More than a year on, Louise still feels the same. ‘Compared to the thought of losing Reuben, I knew he – and I – would overcome the disabilities he would have,’ Louise says.

‘Doctors were still concerned that vital organs such as his kidneys or brain could be affected so all I could do was wait. As he slowly came round from the drugs, I could see immediately that the old Reuben was there and within days he was transferred back to Chelmsford.

‘By now, Reuben’s burn had reached third-degree status and he needed to have skin from his inner thigh grafted on to his chest. With no option now but to amputate, surgeons did not know how much of Reuben’s legs they could save until he was on the operating table. Soon, however, it became clear that he would lose both below the knee and seven of his fingers, as well as the tips of his thumbs.

‘I was apprehensive about Reuben seeing his legs after the operation but he was very good about it,’ says Louise. ‘It has taken time for him to become accustomed and he still can’t walk for longer than ten minutes on the prosthetic limbs. Often he is happier without them at all, shuffling along on the ground, but he knows he has to learn to use them as much as possible.

‘And he wasn’t at all concerned about how he looked. These days he laughs and says, “Look at my stumps.”’

Reuben has learned to walk on his prosthetic legs and, although his motor skills are poor and he finds many everyday tasks, such as dressing himself, difficult, he can grip a pen between the stumps of his fingers and hold and carry objects.

‘They have said funding for children’s prosthetics is limited,’ says Louise. ‘Reuben only has fixed ankle prosthetics for walking but he can’t use them in the playground to run around so he plays without them.

‘He is still enjoying himself in the playground – it doesn’t stop him – but it is heartbreaking to see his knees getting red raw.’

In spite of everything, however, the family are optimistic about the future. Louise is also channelling her energies into a dual campaign to raise greater awareness of the symptoms of toxic shock syndrome and to call for better funding for children’s prosthetics.

‘But every day, I’m so grateful he survived,’ she says. ‘Reuben is my Mr Positive. I just have to look at him and I smile. He is such a trooper.’ Her joy is tinged with sadness that all this could have been avoided.

As her solicitor, Tim Deeming, a clinical negligence specialist with Slater and Gordon, explains: ‘Reuben has life-changing injuries as the team made the wrong diagnosis in suspecting a throat infection. It is extremely concerning that they were aware of the link between burns and toxic shock, yet didn’t consider this for Reuben’s case.

‘With toxic shock syndrome, early diagnosis is vital as the potential outcome can be catastrophic, as occurred here.

‘That is why it is imperative that lessons are learned to ensure this doesn’t happen again.’

Determined to raise awareness about toxic shock syndrome, Louise is hoping her Reuben Bear campaign will help more people recognise the symptoms. ‘We chose the name Bear because it highlights the four simple steps to look out for,’ she says.

‘B for burn: has the patient suffered recent burns or injuries? E for examine: are there signs of infection such as fever, sore throat, vomiting and dizziness.

‘A for advice: toxic shock syndrome and sepsis can be life-threatening so if you suspect it, seek medical advice immediately.

‘R for referral: ask for a referral to a burns unit if you are concerned about toxic shock syndrome.’

A spokeswoman for Ipswich Hospital Trust confirmed the hospital had admitted ‘full liability for shortcomings’ for the care Reuben received. She added: ‘The Trust are committed to ensuring Reuben is appropriately compensated so that he has the care, prostheses and equipment that he needs throughout his life.’