A troubled NHS trust has apologised to the grieving parents of a four-year-old for failing to inform them about a report which gave an alternative cause of death to what they were officially told.

Nailah Shah of Beaumont Road in Leyton died in Whipps Cross Hospital in July 2014 from over-hydration - but her parents Wajid, 36, and Shahenaz, 32, were told her death was due to complications from her rare genetic disease.

The tot, who attended Dawlish Primary School in Jesse Road, Leyton, had primordial dwarfism and a severe form of Schimke Immuno Osseous Dysplasia, a condition characterised by a short stature, kidney disease and a weakened immune system.

Following the tragedy in June 2014, Barts Health NHS Trust carried out an investigation and concluded that it was unavoidable.

East London and West Essex Guardian Series:

However, when her parents asked for their daughter’s medical notes - because their sons, Muhammad and Armaan have the same condition, they were shocked to find another report which was never discussed with the family.

It found Nailah died as a result of over-hydration from fluids and that there was a shortage of staff at the hospital.

Shahenaz said: “Nailah was a wonderful and affectionate girl, who despite her condition, was always happy and smiling.

“The last three years have been hard enough trying to come to terms with the death of our precious daughter without the constant battle for answers.

“While Nailah had a shortened life-expectancy she still deserved the basic human right of receiving the best possible care. We feel totally let down by the care she received. What’s made this even worse is how we seem not to have been told all the facts about our daughter’s death.

East London and West Essex Guardian Series:

“If Barts Health could not locate Nailah’s medical notes from when she was admitted to Whipps Cross to when she died, how could it carry out a full serious investigation report?

“While it will not make up for losing Nailah, our family deserve to be given the answers of why Nailah died and how our family and doctors can look after other children with the same condition to prevent it from happening again.”

Nailah was admitted to A&E at Whipps on June 30 2014 with a cough, vomiting and lethargy and was diagnosed with kidney failure and developed breathing problems. Days later, on July 3, she sadly died.

An initial report by Barts was critical of how staff managed Nailah’s increasing need for oxygen and said the on-call consultant had not been informed of her deteriorating health.

However, it concluded she died of fluid in her lungs as a result of kidney failure associated with her condition.

Two years later, in June 2016, North East London NHS Foundation Trust published a report which found that her death was likely to have been as a result of over-hydration caused by fluids.

East London and West Essex Guardian Series:

It concluded that there was no one monitoring her fluid levels due to staffing problems.

The couple were also told by Barts that it was “unable to locate” medical notes regarding their daughter’s admission to the hospital and that no minutes were recorded at a ‘rapid response’ meeting held by doctors following her death.

Barts Health NHS Trust has now admitted liability and issued an apology to the family.

A spokesman said: “We are very sorry for the failings in care and have expressed our condolences to Nailah’s family.

East London and West Essex Guardian Series:

“We’ve transformed our services since, with over 170 more staff in post and strengthened processes for monitoring hydration.

“We train all staff to ensure absolute openness and honesty when things haven’t gone right and our children’s services were rated ‘good’ in their last inspection.”

Shahenaz thanked the Walking with Giants Foundation after the charity supported the family.