Sheffield mum opens up on son’s ‘nightmare’ battle with Kawasaki disease after Mrs Hinch bombshell

A mum from Sheffield has opened up about her son’s terrifying experience with rare Kawasaki disease.

Kristy Eggington, a nurse practitioner, talked about her experience after seeing Instagram influencer Mrs Hinch talking about her own experience with the disease. Mrs Hinch described her son Ronnie’s recent Kawasaki disease diagnosis as a “real life nightmare” after revealing the three-year-old had been kept in hospital for 10 days and underwent countless tests, reports OK!.

Kristy, 33, has a three-year-old son, Eric, with her husband, Richard, 41. Earlier this year, their little boy was diagnosed with atypical Kawasaki’s disease.

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Kristy said: “It just started with a temperature one day – which we kept an eye on – but the next day, we noticed he had a swelling in his neck.

“We took him to the doctors straight away and they immediately thought it was mumps, but he’d had his MMR [vaccine]. I originally just went along with what the doctor’s said, but it was my mother-in-law who said, ‘This is wrong’. It was then that he got gradually worse.”

Kristy explains: “They couldn’t keep his temperature down, he was really pale but had a rash. Neither ibuprofen or paracetamol were working in the long-term. He lost so much weight. He was vomiting and hallucinating. He developed the typical ‘strawberry tongue’ symptom later on.”

Instagram ‘cleanfluencer’ Mrs Hinch – also known as Sophie Hinchcliffe – 33, was forced to call an ambulance after her son Ronnie came down with a high temperature. Kristy and Richard had a similar experience and had to rush Eric to A&E where the doctors quickly said mumps was not the cause.

“They said it might be an infection in his lymph nodes – possibly lymphadenitis,” Kristy recalls. “So, they got him straight onto antibiotics, but they didn’t work.

“He had six different types over several days, to no effect. He even ended up having an allergic reaction to one of the types of antibiotics – vancomycin – which is used for antibiotic resistant bacteria.

“They kept him in hospital during this period, but he kept having spikes in temperature – it was over 40 degrees. He wasn’t suffering with the infection they thought he was.”

Sheffield Children’s Hospital medical staff were forced to bring the Infectious Diseases department in to assist, and it was then that Kristy’s worst fears seemed to be becoming a reality.

“They did an echo on his heart and saw he had right coronary dilatation and left coronary aneurysm,” she tells us, becoming teary.

Colonoscopy specialist Kristy was at this point spurred on by something she’d recently seen on TV, which gave her hope that her little boy would receive the treatment he needs.

“In my nursing background, I’ve never come into contact with this disease because my prime focus is colonoscopies. But I’d watched an episode of Grey’s Anatomy, where a mum brought her child into hospital before she was told it was a viral infection.

“She knew that it wasn’t, and eventually, it turned out to be Kawasaki. I’d understood his bloods were high, so I said to the Infectious Diseases team, ‘Are you checking for Kawasaki? Are you checking for lymphoma?’.”

Kristy notes: “I remember one of the doctors bringing in a group of medical students when Eric was asleep and asking me about his symptoms, in the hope that one of the medical students could guess what it was. Out of the eight of them, only one of them guessed what it was.”

After Eric had been kept in hospital for ten days, the family received the news they’d been hoping for – he’d received a proper diagnosis.

“We were finally told that Eric had atypical Kawasaki’s disease. Although he had a couple of the disease’s typical symptoms – swelling on one side of his neck and a high temperature – it was his heart that indicated what it was he was suffering with.”

The doting mum admits: “I was more worried prior to the diagnosis because, being medical myself, I knew that not responding to antibiotics can lead to a scarier path.”

Becoming emotional, she remembers: “And when you start hearing words like ‘Intensive Care’, it’s terrifying. So, once we had that diagnosis, I felt such a rush of relief, because once you know exactly what it is, you can treat it.”

Eric was immediately treated with IVIG [intravenous immunoglobulin] – as well as steroids and Aspirin – and within a few hours, his symptoms were relieving.

“Although he slept for a few days whilst getting proper treatment, Eric’s improvement was rapid,” Kristy smiles. “He was really relaxed whilst his body did what it needed to do. Within a couple of days, he was bouncing out of bed, wanting snacks and drinks.

“He continued with medication for six weeks after he was discharged to keep his blood thin and to allow the steroids to combat the vasculitis, and his aneurysm is gone now.”

Despite Eric’s distressing symptoms having now subsided, Kristy confesses that her little boy isn’t quite back to his old self just yet.

“A lot of Kawasaki children become irritable after treatment. He has violent outbursts now, that he never did. He’s always been boisterous, but now he has rage tantrums. And now he has iron deficiency anaemia, so he has to take iron supplements twice a day.

“We don’t know if these things are long-term. But he’ll be regularly monitored by the consultants.”

When it comes to her advice to other parents who notice similar symptoms in their child, Kristy insists to get them checked immediately by medical professionals, especially since the disease can often disguise itself as a fever.

“I just think, when you’re dealing with a temperature that isn’t responding to paracetamol, it’s a cause for concern. You’ve got to trust your gut. Don’t take them to the GP or to a walk-in centre, take them to A&E.

“With some of these diseases, like Kawasaki, you’ve only got a certain window for it to be treated before it becomes lethal. It was ten days before Eric was diagnosed and ended up with an aneurysm, but if that had been diagnosed five days earlier, this wouldn’t have happened.

“None of my friendship groups or colleagues at hospital had heard of it. There’s not enough research into the causes and the effects of it. It doesn’t hurt to have a poster in the GP’s office or in the pharmacy – like the sepsis and meningitis posters – that asks, ‘Has your child had a temperature for more than five days, or a swelling in their neck?’.”

Kristy adds praise to mum-of-three Mrs Hinch for opening up on her own family’s experience, believing that awareness needs to be raised on the rare condition.

“But so many of my friends sent me Mrs Hinch’s story today,” she says. “Reading it, it was exactly the same as what happened to Eric. She described it as a ‘nightmare’, and I can say first-hand, it really is. I’ve sent her a message of love, so I hope she sees it.”

Kristy also thanks staff at the Sheffield Children’s hospital, describing them as “unreal” for the dedicated treatment of her only child.

“Despite them being unsure what it was at first – thinking it could have been lymphadenitis – they were really quick to treat him. We were never questioned or sent home. They tried really hard the whole time to get him better.

“My husband Richard is doing a charity 10km run in September in Sheffield to raise money for the Children’s Hospital for all the work they do, so any donations would be much appreciated.”

Richard will be running to raise money for Sheffield Children’s Hospital – you can donate here.