Six-year-old Zharyia died at North Mid after waiting over a year for a lung transplant that never came, reports James Cracknell

An Edmonton father says he is still seeking “justice” for his daughter three years after the six-year-old died at North Middlesex Hospital.

Ira Stubbs says he and his family have had no closure following the death of Zharyia, who died with an undiagnosed lung disease in July 2019 after spending the last year of her life in hospital.

The family had moved to the UK from the Caribbean in 2018 – seeking a lung transplant for Zharyia – and have remained here ever since as they continue to demand answers over her death.

Ira Stubbs and his family are from Turks and Caicos Islands, a British Overseas Territory with a population of 57,000. There are two hospitals but no specialist care, so it is normal for islanders to travel long distances for treatment.

Zharyia was born in February 2013 as the youngest of five children. Ira said initially she was “healthy” but, with a history of asthma in the family, Ira immediately noticed when Zharyia developed symptoms.

“Our journey with her started at the age of three,” said Ira. “She had signs [of asthma] but we had to wait for a diagnosis because healthcare was very limited.

“At first they said there was nothing wrong with her, even though she had trouble breathing. A few months later she kept complaining her chest was tight. We went to a second doctor who said her heart was enlarged – they said she had an adult-size heart in a four-year-old’s body – and they immediately raised a flag.”

Zharyia was moved by ‘medivac’ – an air ambulance – to the Bahamas. But finding the right specialist who could diagnose Zharyia proved impossible in the Caribbean and, after being labelled ‘critical’, the family’s health insurance company agreed the best solution was to fly Zharyia to Toronto, Canada. Doctors there confirmed she was suffering with an unspecified type of interstitial lung disease, an umbrella term for a group of respiratory diseases.

It was decided that Zharyia’s best hope of a full recovery was a lung transplant, but Ira was told the chances of finding the right organ donor for a girl of Zharyia’s age was low and that there was a better chance of success in the UK.

“They said the best bet was for her to come to London,” Ira said, referring to Great Ormond Street, the world-renowned children’s hospital. “It would have been easier to go to America because we have family there but the insurance company was saying they would set us up in London for six months.

“Then, when we came here, we had no money and no place to stay, so the hospital placed us into its parent accommodation.”

Zharyia arrived at Great Ormond Street in July 2018 and would remain there for nearly a year. Ira said he was unhappy with the way Zharyia was treated at the hospital from the beginning, saying he felt the family were disrespected and that he “took offence” from the way they were spoken to by Zharyia’s consultant doctor. They requested a different doctor handle Zharyia’s care but this was denied.

“From the time she came to the UK she got two days out of hospital through the whole year,” said Ira. “Coming to London we knew there were more resources and we felt positive about it, but when we had that first meeting [at Great Ormond Street] it started to go wrong.

“The patient liaison service was making us feel uncomfortable […] no-one was helping us.”

By now the whole Stubbs family, except for the eldest child, had travelled to the UK and been placed by Camden Council into temporary accommodation in Hoddesdon. Back home in Turks and Caicos, Ira had worked as a tourist boat captain, while his wife Zshanai had worked for border patrol, but they struggled to find work in the UK as so much of their time was spent at hospital by Zharyia’s bedside.

While the long wait for a lung transplant went on, Ira wrote a letter via his lawyer to Great Ormond Street, requesting Zharyia be discharged so she could live at home with the aid of a ventilator, while still seeking a transplant. “We got the lawyer involved because we were in fear for her safety,” he said.

However, it was another four months until Great Ormond Sreet agreed to discharge Zharyia. Now living in Edmonton, the family were given two portable ventilators by the hospital, but they complained that one of them was defective. A document from the manufacturer, seen by the Dispatch, confirms that one of the ventilators had to be repaired.

Within two days Zharyia was readmitted to hospital, this time North Mid. She would spend five days there, where her condition deteriorated. Ira had signed a form requesting the hospital attempt resuscitation in a worst-case scenario, but he claims the hospital ignored his wishes. Zharyia died on 17^th July 2019.

Following a post-mortem examination a coroner ruled Zharyia died of natural causes. Ira has sought for three years to challenge this verdict, demanding an inquest to determine if there had been any medical negligence involved, but this avenue is no longer open to him because of the time elapsed since Zharyia’s death.

Ira believes his daughter should still be alive today. “This should never have happened,” he said. “The post-mortem indicated nothing was wrong, but I recorded everything – they refused an inquest because they didn’t want to see the evidence I had.”

Ira claims both Great Ormond Street and North Mid are responsible for Zharyia’s death. “We just want closure and justice for her. […] if they had listened to us she wouldn’t have died.”

A spokesperson for Great Ormond Street Hospital for Children said: “We are very sorry about Zharyia’s death. We know how devastating her loss has been for her family.

“Zharyia’s health was very complex and we worked to put her best interests at the heart of all decision making.

“We know that her family were unhappy with aspects of her care and made a complaint. We thoroughly investigated the concerns and shared the learnings with the team involved. We also met with the family to explain what we found and the action we were taking.”

A North Mid spokesperson said: “We offer our sincere condolences to the family on the death of their daughter Zharyia. Losing a loved one is devastating, and we fully recognise the impact her loss has had.

“We regularly involved the family in Zharyia’s treatment and actively worked with them to help make sure we provided their daughter with the best possible care.”

The Stubbs family continue to live in Nightingale Road, Edmonton, with Ira saying they intend to stay in the UK until they get closure for Zharyia’s death. Reflecting on his daughter’s short life, Ira added: “She was the smartest, brightest kid. She was vibrant and spiritual. She liked going to the petting zoo [at Great Ormond Street] but when she came to Enfield she never got a chance to go outside.

“She just wanted to live a normal life.”

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