THE family of a four-year-old girl who died following surgery at Leeds General Infirmary’s controversial children’s heart unit have said they still have questions about her treatment.
Mylee Weetman, from Doncaster, South Yorkshire, died in March 2013 after treatment at the unit, which was temporarily closed days later and has been at the centre of a bitter debate about the future of children’s cardiac surgery in England.
Mylee’s family thanked Leeds coroner David Hinchliff after he delivered a narrative conclusion following a six-day long inquest in Wakefield in which he said she died following “a rare but recognised complication of this necessary surgery”.
But, in a statement, the family said: “We still, however, have questions about Mylee’s treatment at Leeds.”
The statement said: “It has been so distressing to relive the events around Mylee’s death.
“There have been no easy answers for us throughout this process, but we have to know the truth.
“It hurts even more to know that there are other families who feel that their children were harmed at the Leeds heart unit. Only a week after we lost Mylee, the unit was temporarily closed down, and this only makes us more anxious about the care that children were receiving there.
“We hope that lessons will be learned from Mylee’s story, and that this will go some way to preventing this from happening to anybody else’s child. We will never forget Mylee, and we owe it to her to find the truth about what happened to her.”
Family lawyer Laurence Vicks, said: “The family want to take stock. They have had the benefit of this pain staking investigation.
“They now know the cause of death and they feel aggrieved Leeds General Infirmary didn’t them an explanation and were ask to just accept this brain damage as just one of those unfortunate things.
“The family’s concern is although there may have been doubts there was a residual hole. They want to investigate whether the suggestion of a hole in the heart should mean surgery should have been handled differently.
“They are haunted by the fact that earlier diagnosis and treatment could have saved Mylee.”
The inquest heard how Mylee was diagnosed with a congenital heart defect - tetralogy of fallot - shortly after her birth in January 2009.
The condition included a hole in Mylee’s heart, too much muscle in one chamber and a too-narrow artery to her lungs.
She underwent surgery at the age of 13 months to repair the hole in her heart and the muscle.
Mr Hinchliff heard how Mylee had to have a second operation on March 15, 2013.
During the inquest, Mylee’s mother, Siobhan Casey, said in a statement that she was initially told the operation had gone well but that her daughter had suffered an allergic reaction and been given medication.
It became clear Mylee had suffered “horrific brain damage”.
The parents agreed to turn Mylee’s ventilator off on March 21.
In his narrative conclusion, Mr Hinchliff said that during the operation a micro-embolic air embolism reached Mylee’s brain and obstructed the blood flow.
He said: “This embolism is a rare but recognised complication of his necessary surgery and was responsible for Mylee’s rapid deterioration and her death.”
Operations at the LGI unit were temporarily suspended a week after Mylee’s death after NHS England raised concerns about data on death rates at the centre.
The move provoked huge anger and debate, especially as some parents and clinicians from the unit linked it to the ongoing controversy about which children’s heart surgery units were to be closed as part of a nationwide rationalisation of the service.
A subsequent review found children’s heart surgery at the centre was safe, although the health trust apologised to 16 families who complained of poor care at the unit.
But a group of parents has continued to question the safety of the unit, which was originally scheduled to shut as part of the national reorganisation of paediatric care. This programme was halted following a legal challenge by another group of parents and other supporters of the unit.
After the temporary closure and review of the LGI unit, the Government announced it would look again at the national reorganisation and has yet to decide on how it will proceed.
Dr Yvette Oade, chief medical officer at Leeds Teaching Hospitals NHS Trust, said after the inquest: “I would like to reiterate my deepest sympathy to Mylee’s family for their loss and fully understand their need to know how their daughter died.
“I hope this hearing, although painful for them, will have provided the answers they needed.
“There has been a very thorough examination of the facts of the case and the Coroner concluded that while the surgery was performed correctly, Mylee sadly suffered a micro-embolic air embolism which is a rare but recognised complication of this procedure.”