THE father of a child who died after battling a rare illness that affects just 20 children in Britain hopes that lessons can be learned from her short life.
Three-year-old Megan Parton, who suffered from the premature ageing disease Cockayne Syndrome (CS), died suddenly in July 2009 after an infection in her kidneys spread to her bloodstream.
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But her heartbroken father, Tim, maintains that treatment for Megan could have been handled better if medical staff knew more about the condition.
Following an inquest at Rotherham Coroner’s Court on Wednesday, Mr Parton said:
“For parents who have a child with CS, it’s as though they have to become doctors themselves, there are so few specialists to offer advice through experience with patients. There is no support structure in place at all.
“Hopefully, the doctors who have come into contact with Megan during her life can contribute in some way to a further understanding of the condition.”
At Wednesday’s hearing, the Rotherham Coroner, Ms Nicola Mundy, told how Megan died after a weekend over which her parents, Tim Parton and Liz Essex, suspected she was unwell.
Megan’s mother was preparing the youngster for a visit to hospital on Monday, July 20, last year when she suddenly stopped breathing.
Paramedics were called to the family’s home on Renishaw Avenue, Broom, but attempts to revive her failed and she was pronounced dead shortly after her arrival at Rotherham General Hospital.
At a hearing in December, pathologist Dr Mudher Al-Adani said that Megan died as a result of blood poisoning resulting from a kidney infection. He added that her death was related to her illness.
“Cockayne Syndrome sufferers are more vulnerable to infections and that may well have been the case here,” he said.
Dr Al-Adani said that Megan’s infection might have been present for just three days prior to her death.
On Wednesday, the consultant paediatrician who dealt with Megan during visits to
Rotherham General Hospital, Dr Sanjay Suri, gave a different opinion. He insisted that Megan’s death was not related to CS, but then admitted: “There are so few cases of CS, so little is known about the condition that it becomes difficult to know how sufferers might react to different infections.”
Ms Mundy, recording a verdict of death by natural causes, concluded that CS had reduced Megan’s ability to fight off the infection which eventually led to her death.
Despite being offered two differing medical opinions, she said: “It’s my view that Cockayne Syndrome was contributory in Megan’s death as it made her more vulnerable to the effects of the infection.”
The symptoms of Cockayne Syndrome include premature ageing, progressive hearing loss, chronic vomiting, sensitivity to sunlight, tremors and cataracts.
Sufferers also do not develop properly. At just 17lbs in weight and 18in tall, Megan was smaller and lighter than her one-year-old brother Sam.
She could not talk, had to use a standing and sitting frame and suffered from hearing and sight problems.
Mr Parton, who has vowed to continue efforts to improve understanding of the condition, said: “I am glad that the coroner highlighted CS as a contributory factor in Megan’s death—that way others may be able to learn something from it in the future.
“Only through study and experience can medics gather the knowledge they need to support CS patients. At the moment, there are just two recognised experts in the world and that leaves most people with nowhere to turn.”