A distraught mum keeps getting accused of hurting her daughter – because the girl keeps bleeding from her face.
Melody Driscoll, nine, suffers from a horrific condition that causes sporadic bouts of severe internal and external bleeding – including from her ears, eyes and nose.
But loving mum Karina Driscoll is getting fed up with strangers not understanding her daughter’s rare condition – and keep accusing her of harming her little girl.
The brave girl has a number of complex medical problems, one of which is undiagnosed, and her family has struggled to manage her pain.
Since medics stumbled across a method of managing the bleeds with a combination of morphine and ketamine, her mother Karina Driscoll, has been trained to administer the drugs when Melody suffers from bouts of pain.
But when the family, from New Addington, south London, visited a local children’s hospice, Karina was accused of harming her suffering daughter by one of the nurses.
Full-time carer Karina, 34, said: “We continue to constantly fight to find out what her condition is before this awful thing takes Melody from us.
“We do everything we possibly can to protect Melody so to be accused of doing something that isn’t right for her had such an impact on me.”
Melody and her parents were staying at Shooting Star Chase children’s hospice in Guildford, Surrey, when a nurse, who Karina says did not fully understand Melody’s need for the drugs, raised a safeguarding complaint against her which resulted in an investigation by Croydon Social Services.
Even though her name has now been cleared, Karina is heartbroken at the accusation, as she has spent nine years caring for her daughter under very distressing circumstances.
Melody was not expected to survive past the age of four and her parents live through every day knowing she could die at any moment.
The family were two days into a five-day stay at the hospice on June 8, in order to help staff understand Melody’s condition before an extended stay in August, when Karina administered her daughter a dose of drugs by pushing a button.
This was because Melody, who cannot vocalise her distress because she has very limited speech, was lashing out at medical staff.
Karina says this meant Melody was in pain, and at immediate risk of bleeding, but a nurse who was present felt the girl was simply displaying challenging behaviour, and that the dose was unnecessary.
A safeguarding concern was raised by the nurse on July 13 and Karina was first made aware of it at the end of July when she was called into a meeting.
A separate complaint was also made against her husband Nigel, who was alleged to have shaken Melody to wake her up, risking her bleeding.
However, he too was found to have done nothing wrong.
Karina, and Nigel, 45, have two children together – Joshua, four, and one-year-old Logan – and Karina has a third son, Adam, 13, who, along with Melody, has a different biological dad.
She feels the accusation could have torn her entire family apart, and has never received an apology from the hospice.
Karina added: “This could have resulted in my whole family being taken away from me and the reason I want to share my story is that I don’t want anyone else to go through what we’ve gone through.
“We’re quite a strong family because of everything we have gone through with Melody but another family could be destroyed by something like this.”
She wants the hospice to ensure all of its staff are fully briefed on a child’s care plan and medical needs so that no more families have to experience their distress.
Melody’s undiagnosed condition causing the severe bleeds requires regular blood transfusions, and she also suffers from Rett syndrome, which affects the development of the brain and causes severe physical and mental disability.
She is barely able to speak, so her mum relies on her knowledge and experience of her daughter’s conditions to know how to care for her.
Her illness also causes Melody to suffer from epilepsy, hyperventilation and acid reflux, and as her small intestine does not function properly, she cannot eat and has to be fed by an IV line, as well as using a colostomy bag.
Although a mixture of ketamine and morphine is an extreme measure for such a young person, her mum said it has helped improve her quality of life.
Karina said: “I shouldn’t have to see fresh blood coming out of my baby girl’s body.
“It’s impossible to explain what this does to a mother.
“Every new drug that she is put on breaks my heart a little bit more.
“I feel like I’m on a countdown with her.
“I can’t get over the fact that, day in, day out, I have to watch my little girl slowly dying in front of my eyes.
“So I try to concentrate on seeing a positive – the quality of life that these drugs actually give her.
“Before she was put on her PCA pump, a pump connected to an IV line that delivers a small but constant flow of pain relief, Melody was constantly in pain, to the extent that she didn’t want to even sit up because she couldn’t handle it.
“Her eyes were always swollen closed, she was always covered in bruises, as a result of internal bleeding.
“She couldn’t even sit up before but now she is happy.
“Some days if you looked at her you wouldn’t even know she had all these things wrong with her.
“What scares me is that if she had been taken away from me, she would have given up on life.
“She’s so family-orientated.
“She can’t generally talk but she turned around the other day and said to Nigel ‘I love you’.”
A spokesman for Shooting Star Chase said the hospice currently cares for 700 families across London and Surrey who have a child with a life-limiting condition and that they regularly meet with professionals to ensure they have a full understanding of a child’s needs.
He added: “Our qualified nurses and carers work to a professional code of conduct and have an obligation to raise any issues in order to resolve them in the best interest of the child.
“We have been in communication with the Driscoll family to explain our processes in line with regulatory obligations, and are happy to continue that communication should the family wish to do so.”