A mother has told of her heartbreak after discovering her daughter faces losing the ability to walk after being repeatedly ‘misdiagnosed’ by medics – and the NHS rejected her application for a special wheelchair.
Faye Errington’s young girl Orla, 10, spent just five days out of hospital after her birth before being rushed back with a heart murmur, and has barely had a day without a horrendous health complication since.
Orla was born with three holes in her heart, two of which have now closed, a single kidney – which has caused incontinence and left her prone to severe infections – and just one fully joined hip socket which later transpired to be hip dysplasia.
Just three months into her life, Orla also briefly stopped breathing and suffered repeated choking episodes which Ms Errington described as ‘acute life-threatening events’ which still happen today.
She now relies on regular respiratory physiotherapy, suction and careful monitoring at night because her airways can suddenly block without warning.
Orla also has Kabuki Syndrome, a rare genetic condition which affects multiple parts of the body, but in the youngster’s case has primarily meant every milestone – whether it be her speech, movement or intellect – has been delayed.
Such wide-ranging conditions have left her with many challenges throughout her life, including a diagnosis of a severe anxiety disorder known as selective mutism, which means she is only comfortable talking to her own family at home.
Despite continued challenges, Ms Errington says Orla continuously ‘picks herself back up again’ as they find ways to smile, laugh and ‘have fun multiple times a day throughout her struggles’.
Faye Errington is pictured with her young girl Orla, who has spent much of her life in hospital
Five days after being born, Orla (pictured as a baby) was rushed back to hospital with a heart murmur
Orla now uses a walking frame at home, but is rapidly losing her mobility and is facing a future where she is unable to walk
But one thing little Orla can’t put a brave face on is the agony she faces when trying to walk.
Ms Errington says she was recently told that both of her daughter’s kneecaps are ‘severely dislocated’ – which could see her mobility fully wane without surgery that does not guarantee a fix and could leave her ‘instantly immobile’.
Orla’s right thigh bone is also twisted, meaning she can currently only walk short distances with great effort and pain – even with the help of a walking frame which she uses at home.
She frequently falls, a problem not helped by the structural abnormalities caused by her Kabuki Syndrome, and she currently relies on a self-propelled wheelchair which she ‘can’t move beyond a few feet without stopping’.
It has left Ms Errington desperate for a powered wheelchair for her daughter, but after her application was rejected by the NHS, she has launched a GoFundMe in order to fund as much of it as possible.
But all of this, the mother-of-three claims, could have been prevented if medics had listened to her initial pleas.
‘Her hip dysplasia as a baby wasn’t picked up on by the hospital,’ Ms Errington told the Daily Mail.
‘For months I told them something was wrong with her legs, but they all said Orla was fine.
‘I remember once having seven doctors around her bed. I was crying as I told them that I knew something was wrong with her legs because I have other children, but they assured me she was fine.
‘I crumbled to the floor in that moment.’
Ms Errington said her continued imploration eventually led medics to do an X-ray, the results of which revealed Orla had no hip socket on one side, and a severely dislocated one on the other.
Orla then underwent two rounds of ‘traumatising’ surgery where she woke up in a full body cast, from her breast bone to her ankles.
‘It was so hard to keep her happy,’ Ms Errington continued. ‘They had to do a lot of bone graft and various other things to create a hip socket which her bones grew around, so she now has one.’
Ms Errington said Orla should have had another operation to fix the condition, but says her specialist advised against doing so because it ‘wouldn’t solve all her problems’ and ran the risk of distressing her daughter further.
Ms Errington said she first raised concerns with medics at Leicester Royal Infirmary around four years ago when Orla began struggling to walk up stairs.
At the time, Ms Errington said Orla’s orthopaedic specialist put this down to complications of hypermobility, but the mother recalls that ‘this didn’t seem right’.
And when her daughter began innocuously ‘screaming in pain’ while she was changing her clothes, she had to make yet another journey to the hospital to discover the root cause.
She said: ‘I took her in for an X-ray on her right knee and was told she was absolutely fine. I remember being shocked at that.
‘Orla’s weakness continued to worsen and she started having some really bad falls, so again I took her to see her specialist. At this point he took one look at her and said she needed knee braces.
‘It was suddenly taken so seriously as you could visibly see Orla’s knees now looked deformed. I was both shocked but relieved that something had finally been confirmed and that that someone had finally said this isn’t right.
‘But at this point I had no idea how serious it was going to be.’
Orla (pictured as a baby) is now in agony when she tries to walk and is hoping for a powered wheelchair
Orla (pictured in hospital) began struggling to walk up stairs around four years ago
Around one month after she was sent home, Orla’s knees gave way again and she took another bad tumble. Subsequent X-ray results revealed what Ms Errington had suspected all along – her daughter’s kneecaps were dislocated.
‘I wanted to collapse there and then,’ Ms Errington continued. ‘I wanted to cry and scream but I couldn’t because Orla was right next to me.’
‘I haven’t been the same person from that moment, I had to take a deep breath and calmly say “if an X-ray showed that Orla has a dislocated knee before, how were we sent home that day saying she was okay?”
‘The nurse apologised and simply said it had been marked down as a coincidental finding. I was so deeply shocked. I somehow had to pretend it was okay in front of Orla.
‘I couldn’t hide the pain from my older children though and it broke their hearts. We’re all desperately keeping Orla happy and going the best she can.’
The alleged wait to diagnose Orla has left her facing continued struggles at home.
Years of surgery has left her with extreme trauma, says Ms Errington, which combined with global developmental delay as a result of her Kabuki Syndrome, has had profound impacts on her mental health.
Orla also cannot get in and out of a standard bath or shower in her house – meaning Ms Errington has been left with no alternative but to set up a temporary jacuzzi in the kitchen which requires two people to lift her into.
‘[Orla] herself called a family meeting recently with me, her brother, sister and sister-in-law,’ Ms Errington said.
‘We all sat on the bed and Orla broke down crying, her heart broke and she told us she’s upset because she wants a bath, not a paddling pool or lazy spa in the kitchen but she said she just wants a proper bubble bath like everyone else.’
‘We have applied to a local charity who does wishes, all Orla wishes for apart from her powered wheelchair in life is a hot bubble bath’.
Orla’s bath is among a number of things which have been moved downstairs as a result of her lack of mobility.
Orla (pictured as a baby) has a rare genetic condition called Kabuki Syndrome which has meant every milestone – whether it be her speech, movement or intellect – has been delayed
Last month, she was taken to hospital after a ‘four-hour’ wait for an ambulance after her something in her leg ‘snapped’, and when returned home was allegedly left with little equipment to assist her – meaning Ms Errington and her family had to drag a mattress to the living room floor.
Orla was stuck there until Ms Errington hoisted her up with sheets, but the mother says they desperately need a hospital bed and equipment to help take care of her at home which has not been provided.
Ms Errington said: ‘It’s giving us a glimpse into the future and that’s the most heart- shattering thought. This is no quality of life for Orla.
‘She’s normally the happiest girl in the world despite what she goes through, we’ve been able to make her life the happiest with our sense of humour and personalities are but making her happy right now is so hard.’
She added: ‘Orla can’t move, she’s totally bed ridden. We’re desperate for help, desperate for her wheelchair.’
Orla has also been out of school for more than a year, and Ms Errington worries that a lack of education, and not being surrounded by friends, could have a catastrophic effect.
The mother-of-three had to remove Orla from her previous special needs school because they ‘could not meet her needs’ after she had ‘a lot of accidents’ including a broken arm and bruising to her damaged thigh.
Ms Errington claims Orla’s teacher denied her having any accidents in their care, but says her daughter – who would be quiet all day at school – would then come home and tell her what happened.
She said one teacher ‘picked her up off the floor and took her to a bench instead of the medical room’ after a fall.
Ms Errington is still looking to put her daughter into a new school but still isn’t any closer to finding a suitable one – but says the toll of looking after her daughter full time has been extremely difficult.
What lies ahead now for Orla is many gruelling rounds of ‘major complex surgeries’ which could leave her permanently wheelchair bound.
‘A question I’m often asked is “how come she needs another wheelchair if she’s already got one?”, Ms Errington said. ‘The answer is Orla has limited strength and apart from a few feet she can’t move herself.
‘Orla desperately needs her independence both in and out of the home to move herself around. With her condition getting more severe and her mobility decreasing the future is unimaginable, Orla should have had a powered wheelchair years ago.’
She added: If Orla had the wheelchair she needed she’d have independence in our home and be able to get around, it has the correct posture for her and elevated leg rests which she desperately needs.’
Ms Errington says Orla ‘defied all the odds’ by even learning to walk in the first place, even though she was severely delayed until three years old.
She added: ‘It already is devastating with her mobility decreasing but it’s going to be heart shattering when she loses her mobility, I honestly don’t know how she or I will cope with the future but I pray we find our strength like we always have.’
Orla was born with three holes in her heart, a single kidney and just one fully joined hip socket
The mother says said she is still ‘in shock’, adding: ‘Especially after being reassured for so long that Orla’s knees were okay and it was her existing conditions.’
She continued: ‘I’m numb and trying to remain strong. I haven’t yet processed this life changing news and I’m struggling to do so. Things are going to get extremely hard for not just Orla but us all as a family.
‘Orla lives to walk the little but that she can. I can’t imagine life without her being able to get on her feet. I can’t imagine life with her sofa bound. I can’t even begin to imagine the struggles that she will face and how that will impact her and us.
‘I don’t know how she’ll be happy and she loves to be happy. She’s a very happy girl with an amazing personality who loves to laugh and have fun.
‘Despite the devastation she already goes through in life every day she picks herself back up again and we find ways to smile and laugh and have fun multiple times a day throughout her struggles.’
Ms Errington said Orla is a ‘real ray of sunshine’ who, even when she’s in pain, will make her family laugh.
She added: ‘She’s cheeky, funny, and full of imagination. Her laughter fills the house even on the hardest days.’
A spokesperson for NHS Leicester, Leicestershire and Rutland Integrated Care Board (ICB) who are responsible for commissioning wheelchairs, said: ‘It is vital we provide the right level of treatment, equipment and advice to help support patients and their families while doing so within the resources we have available to us.
‘We have to apply criteria for packages and pathways of care to make sure what we offer and can provide is affordable. We have to balance resources across all patients in Leicester, Leicestershire and Rutland that need support according to their medical needs.’
Andrew Furlong, Medical Director at the University Hospitals of Leicester NHS Trust, said: ‘While we cannot comment on individual patient cases, we are sorry to hear of the concerns raised about the care provided.
‘We take all concerns very seriously and encourage Ms Errington to contact the clinical team involved in her daughter’s care, or our Patient Advice and Liaison Service, so we can answer any questions and address these concerns directly.’
