Family Instructs Irwin Mitchell To Establish Facts Regarding Four-Year-Old’s Death

The grieving parents of a four-year-old girl are demanding answers as to why a hospital trust failed to inform them about a report which gave an alternative cause for their daughter’s death to what they were officially told.

Following the death of Nailah Shah, Barts Health NHS Trust carried out an investigation and told the family that it concluded that her death was unavoidable because of complications connected to her rare genetic disease.

However, when her parents Wajid and Shahenaz, age 36 and 32, 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.

Following the discovery, Wajid and Shahenaz, of Leyton, East London, instructed expert medical negligence lawyers at Irwin Mitchell to investigate Nailah’s care and obtain answers from Barts Health NHS Trust as to why it did not tell the couple about the second report.

The couple were also told by Barts Health that the NHS Trust was ‘unable to locate’ medical notes regarding their daughter’s admission to Whipps Cross Hospital in the days before her death. No minutes were recorded at a ‘rapid response’ meeting held by doctors following her death.

Expert Opinion

“Wajid and Shahenaz accepted the findings of Barts Health’s Serious Incident Report as they trusted the opinions of the doctors involved in their daughter’s care. It was not until they requested Nailah’s medical notes to see if there was anything more they could do to help their sons that by chance they came across the second report which identified a different reason as to why she died.

“Wajid and Shahenaz are understandably extremely distressed by Nailah’s death. For the Trust to say it could not find Nailah’s medical records and then to not inform the family about the Child Death Report and its findings has just added to their suffering.

“The family feel that they have been left with no choice but to bring a legal case so that they can get answers from the NHS Trust about what had happened to their daughter and why. There has been a particular lack of openness by Barts Health NHS Trust in relation to the circumstances surrounding Nailah’s death which is in breach of their duty of candour.

“The Trust has now admitted liability and have apologised to the family but it is unfortunate that they were forced to commence legal action in order to simply get the answers that they were looking for. We call on the Trust to learn lessons from this tragic event so that all families who suffer the pain of losing a relative are told the full reasons why they died and what has been done to prevent it from happening again.” Alexandra Winch - Partner

Nailah was diagnosed with a severe form of Schimke Immuno-osseous Dysplasia, which affected her growth.

In June 2014 she visited A&E at Whipps Cross Hospital and her GP with breathing problems. She was then admitted to Whipps Cross on 30 June with a cough, vomiting and lethargy.   

She was diagnosed with kidney failure, and despite initially seeming to respond to treatment she then developed breathing problems. Nailah sadly died on 3 July.

An initial Serious Investigation Report by Barts NHS Health Trust was critical of Nailah’s care, the management of her increasing need for oxygen as well as staffing levels which included the on call consultant not been informed of Nailah’s deteriorating health. However, it concluded she died of fluid in her lungs as a result of kidney failure associated with her condition.

In June 2016 North East London NHS Foundation Trust published a Child Death Overview Report. The report found that her death was likely to have been as a result of over-hydration caused by fluids. The report concluded that there was no one monitoring her fluid levels due to staffing problems.

Following legal action by Irwin Mitchell on behalf of the family Barts Health NHS Trust admitted a breach of duty in the care it provided for Nailah before her death.

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.

“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.”

Shahenaz also thanked the Walking with Giants Foundation after the charity supported the family. The foundation was set up by Sue and John Connerty to help families living with primordial dwarfism.

Shahenaz discovered the charity whilst searching online for help following Nailah’s diagnosis. Since then she has attended the charity’s annual conference to support other families.

John Connerty added: “When the Walking With Giants Foundation first heard of Nailah's passing, many many hearts were broken. Nailah was a child who loved life, her family and meeting up with friends within the WWGF during our annual conventions and retreats.

“We were shocked to learn about the true cause of her death as whilst she had a rare genetic condition with potential life-threatening medical issues, managed properly, Nailah should have lived for many years instead of her four short years.

“We fully applauded and supported Shahenaz  and Wajid in the case against Barts Health NHS Trust for more answers about the cause of Nailah’s death.

“Hopefully the outcome of this case will now lead to better care provisions to be put in place for children with rare genetic conditions and just as important, doctors to be open and honest with parents who have just lost their child.”

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