They thought I had broken 17 bones in my son's body
PUBLISHED: 12:20 18 August 2006 | UPDATED: 22:07 28 May 2010
IT S every loving parent s nightmare, a tiny baby lying in hospital with injuries which cannot be explained. It is assumed the parent is guilty of child abuse. Thirteen years ago, Rosemary Neary was living that nightmare. Today, her voice still trembles a
IT'S every loving parent's nightmare, a tiny baby lying in hospital with injuries which cannot be explained. It is assumed the parent is guilty of child abuse.
Thirteen years ago, Rosemary Neary was living that nightmare. Today, her voice still trembles as she recalls how her six-week-old son almost died.
She said: "It suddenly dawned on me they thought I had done this to him. I was absolutely frantic. I thought I was never going to see him again."
Rosemary's son Jordan has osteogenesis imperfecta, more commonly known as brittle bone disease.
She now uses her own experience to help other families throughout the country who have children with that disease.
Many parents who contact her at her Outwell home have had their children taken into care and adopted. There is no scientific test which is 100 per cent accurate in diagnosing the condition.
Rosemary's support group has been flooded with calls for help since the story of the Hardingham family from Norfolk hit the national headlines. Nicky Hardingham's three children were removed because one boy had unexplained bone fractures. Nicky fled to Ireland to give birth to her fourth child to stop it being taken into care.
Rosemary's own story began even before the birth of her second child. She was worried because she did not feel the baby kicking but was assured everything was fine.
Jordan was born "dead" and had to be resuscitated. Rosemary was later to realise that because of the brittle bone disease the natural birth had been particularly traumatic for him, causing fractures throughout his body.
Even a routine check for congenital hip displacement resulted in Jordan screaming uncontrollably.
When Rosemary took Jordan home the screaming continued and he was prescribed treatment for colic. She said: "I was adamant it was something more than colic.
"I was constantly telling people there was something not right with my child but they said I was being over protective and my concerns were unwarranted."
Rosemary returned home one day to find Jordan lying in his pram with his leg swollen to six times its normal size. After a visit from a doctor, Rosemary went with her son to hospital.
She said: "I was asked if Jordan had been dropped or banged against anything. They told me they thought his leg was broken."
A full body X-ray revealed Jordan had 17 fractures. She was told social services would apply for an emergency protection order.
But luck was on Rosemary's side and a nurse who had accompanied Jordan into X-ray recognised the condition from the colour of Jordan's eyes. The whites of his eyes were a denim blue.
She alerted a paediatric orthopaedic consultant who came to examine Jordan and confirmed her suspicions.
Rosemary never heard from the social workers again. She said: "I didn't know if they were going to turn up and remove my children. I didn't know if I was facing prosecution. My mum put in a complaint but they said they felt they had acted correctly and they never apologised."
The trauma did not end when Rosemary returned to her Newcastle home with Jordan.
She said: "Rumours spread like wildfire. My windows were smashed, someone loosened the wheels on my car.
"It was horrific. I had lived on the same estate all my life and people turned their backs on me. They spat at me in the street."
It was not until Rosemary's daughter Siobhan was nine that an X-ray after an accident showed numerous old fractures. She, too, must live with the condition.
Rosemary's story in a magazine and the national press sparked a huge response from other families going through the same thing.
In 1994, Rosemary and Maggie Eaton, from Preston, set up a support group, The Eaton Foundation, under the umbrella of the Brittle Bone Society.
Maggie's daughter and granddaughter have the disease. That support group is now independent of the society and helps families who have no definite diagnosis. There are more than 200 conditions which result in unexplained fractures.
Maggie died last year from cancer but the group is busier than ever with its campaigns to raise awareness of the disease, to alert professionals to the signs and symptoms and to change the way cases are handled in family courts.
Rosemary, who moved to Outwell 10 years ago, said: "Since the Hardingham case we have heard from more families in three months than I would normally deal with in a year. When you have been through it yourself you know when someone is genuine."
Jordan is now educated at home, completing assignments on his computer. He suffered so many breaks and fractures that attending mainstream school was an impossibility. Meanwhile, Rosemary's daughter Siobhan was looking forward to receiving her A-level results yesterday.
Rosemary hopes that one day an accurate test will be developed to confirm the diagnosis. She said: "It would stop a lot of this heartache."
CONTACT: Rosemary Neary's helpline on 01945 773500.
- Osteogenesis imperfecta (OI) is the most common disease causing fractures in childhood.
- OI is a genetic disorder. It can be passed from one generation to another or arise without any family history. A new genetic mutation means there is a change in the person's genes and it has not been passed on from a parent.
- Some OI children are born with fractures that have happened in the womb.
- The whites of the eyes may be coloured denim blue or grey.
- Deafness may occur
- Trials of new drugs are working well for many with the condition but the long-term effects are unknown