The mother of a four-year-old girl from Doncaster who suffered “horrific brain damage” after heart surgery is still looking for answers about her daughter’s death, an inquest has heard.
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Mylee Weetman, of Rossington, died in March 2013 after treatment at the children’s cardiac unit at Leeds General Infirmary (LGI).
In a statement read out to the inquest at Wakefield Coroner’s Court, Siobhan Casey, Mylee’s mother, said nobody could explain why or how her daughter died.
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.
In the statement read out by Coroner David Hinchliff, Ms Casey said her daughter led a normal childhood from that point until 2012 when she noticed she was becoming tired, occasionally sleeping for 16 hours out of 24.
She said one hospital consultant said her sleeping patterns were normal but, six months later, another doctor said she needed surgery as soon as possible because muscle building up in her heart was blocking her blood flow.
Mylee underwent surgery at the LGI on March 15 2013 and Ms Casey was initially told the operation had gone well but that Mylee had suffered an allergic reaction and been given medication.
Ms Casey said Mylee became stiff down her left side overnight and a scan, which was not carried out until 12 hours later, revealed areas of brain damage and she was told she had suffered two strokes.
She said Mylee’s surgeon told her he could not understand why this had happened.
She said she was also told her daughter needed to be resuscitated after the operation. When she asked the surgeon why she had not been told about this, he told her Mylee had not been resuscitated but her blood pressure had dropped for several minutes.
Mylee needed further emergency surgery two days later to remove fluid from her heart and lungs, which was carried out on the ward.
A short time later, a scan showed that Mylee had suffered “horrific brain damage”.
Ms Casey told the inquest that an “insensitive” intensive care doctor told her and Mylee’s father, Chris Weetman, they should turn off Mylee’s ventilator and tried to pressurise them into agreeing to donate her organs.
She said: “He informed me that the top part of her brain was completely gone and the Mylee I had known was no longer there.”
Ms Casey said Mylee showed signs of improvement over the following days and the hospital began to treat her as a head injury patient.
The young girl then developed a chest infection and her condition deteriorated.
Ms Casey said: “Nobody could explain to me why or how this had happened.”
The parents agreed to turn Mylee’s ventilator off on March 21.
Ms Casey said she wanted answers to a number of questions, including why she was not told about the resuscitation, why it took so long to carry out a scan on her brain after she became stiff, why she was not treated as a head injury patient straight after the scan and whether it would have made any difference if she had been treated earlier.
Dr Marta Cohen, a pathologist, told the inquest a post-mortem examination showed Mylee died after her brain was starved of oxygen.
Her heart and lungs were examined by another pathologist, Professor Mary Shepherd, who said she found no evidence of complications or “surgical mishap”.
Professor Shepherd said she could not rule out an air embolism.
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.
The inquest continues.