Parents who have been jailed, or had their children taken away, might be the innocent victims of doctors failing to diagnose a little-known medical condition that causes joints to dislocate easily and abnormal bleeding and bruising.
A lawyer who successfully campaigned for the release of mothers wrongly imprisoned for murdering their babies, including the solicitor Sally Clark, has embarked on a new battle to clear the name of parents whose children suffer from Ehlers-Danlos syndrome (EDS).
Bill Bache, 74, has six cases in which parents have been either imprisoned, or had their children taken away, but believes the true number of affected families is much higher. EDS, a genetic condition that parents can pass on to their children, could affect up to 2m people in the UK.
One couple, from Northampton, had both their children taken away six years ago, after doctors became suspicious of injuries sustained by their daughter, including a broken leg, when she was 11 months old. EDS sufferers typically have bones that break more easily than other people’s.
The baby’s older brother, then aged two, was also taken into care at the same time.
The couple, who do not want to be named, have spent their life savings of about £40,000 fighting to get back their children. “We are only allowed to see them for a few hours a week. It is a huge strain. They’ve never seen the house we live in now, or played in our garden,” their father said. He hopes a family court hearing this month, which will hear evidence from three paediatric experts describing the EDS affecting the children, could eventually lead to his children coming home.
For other parents, the consequences have been even worse. Emma Wilson, 30, is serving a life sentence for the murder of her son, Callum, when he was 11 months old.
He died in 2011 after suffering broken bones, bruising and an “unsurvivable brain injury”, but Bache insists there is “no way” she should be in prison.
Her father, Nick Wilson, 56, a company director from Maidenhead, Berkshire, has managed to get an EDS expert, Professor Rodney Grahame of University College London, to examine Emma in prison.
Grahame’s report confirmed that Emma had EDS and could have passed the condition to her son. Nick Wilson and Emma’s brother, 26, were diagnosed with EDS last year, which means it is highly possible that Callum was also a sufferer.
“We have lived with this for six years. We always knew she was innocent but it’s only now we have identified EDS as the root cause of Callum’s death,” he said.
“Emma has become a Samaritans worker in prison and is coping surprisingly well. I don’t think anything has hit her as much as turning off Callum’s ventilator in hospital. That’s when she got her life sentence.”
Bache said: “The public is ill-served by a medical profession that rushes to judgment. You get jobbing paediatricians who find a broken bone in a child and immediately decide it’s child abuse, but when you go into it, it’s nothing of the kind. Many doctors and judges have never heard of EDS.
“The impression of Emma Wilson created by the police and the media after her trial could not be more wrong. There is no way she should be in prison.”
Bache is getting a second expert EDS diagnosis for Emma in prison and hopes an appeal can be made against her conviction.
Kay Julier, director of the support charity EDS-UK, said: “We get contacted by around 10 families a year who have been accused of child abuse and there may be many more who never get to us. Although the climate may at last be changing, there is a continuing problem of people not being believed.”