Every night, six-year-old Kaylan Gibson sleeps in a bed her mother describes as “a death trap”.
Within months, Kaylan, who suffers from various medical conditions including cerebral palsy, suffered a busted lip and narrowly avoided getting stuck in her fully adjustable adult bed, as well as falling from it. Fearing for her son’s safety, Kayley Thompson feels she has no choice but to share Kaylan’s single bed, as it’s the only way to protect her baby boy at night.
The family say an occupational therapist told them things looked promising for Kaylan to get a new, specially designed Oasis crib, with high, padded sides to prevent her from injuring herself at night. But now Kayley and daddy Jordan Gibson hopes have now been dashed after a meeting with social workers concluded their son would not be given the bed.
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Kayley, from Pelton, County Durham, said: “I feel betrayed. Disappointed and betrayed. I literally cried throughout the meeting but the response I got was, ‘Don’t think Don’t you think you’re just sleep deprived? A good night’s sleep.’
“How can I do this? When you share a bed with a child who has so many needs, you are afraid to fall asleep in case you hurt him. »
Kaylan was born prematurely at 28 weeks with two fourth-grade brain bleeds, which left him with cerebral palsy. He is unable to walk or manage daily tasks and also struggles with ADHD, as well as being diagnosed with autism and suffering from sensory overload.
Kaylan also suffers from hydrocephalus – fluid on the brain – which required him to have a shunt to drain the excess fluid. And when Kaylan’s shunt got infected earlier this year, he had to have brain surgery to install a new one and Kayley noticed that Kaylan’s mobility had diminished.
Since the age of three, Kaylan had slept in a secure space bed, which zipped up and, according to Kayley, helped keep Kaylan mentally and physically safe to sleep. However, after leaving the hospital in February after further surgeries to be fitted with a colostomy bag and PEG, Kaylan needed a low profile bed, as well as a bed that would fit her. would prevent you from falling or hurting yourself.
Kayley, 25, said: “We were stuck and needed a bed ready for Kaylan being discharged from hospital, which resulted in a high-end adult bed that he’s already banged his mouth on, head and body and caused him and us as parents to be upset and anxious because he doesn’t have a proper bed.”
The mother-of-one added that the corners of Kaylan’s current bed are too sharp and when she spoke with the family’s occupational therapist, she was told to “put bubble wrap around the bed”.
She added: “I just said ‘Can you be serious? It’s a safety hazard to a child choking.” She then tried to call me and said the only thing we could really do was put some bubble wrap on until we let’s have a proper bed for him, which is not at all acceptable from a “professional” in charge of Kaylan’s needs.”
Kayley instead opted to put blankets around the corners of the bed to try to keep Kaylan from hurting herself and continued to sleep in the same bed as him, despite having fibromyalgia, a condition that causes generalized pain throughout the body and extreme fatigue.
Kayley claims she was told she wouldn’t be getting an Oasis crib because the bed would ‘lock Kaylan up’ and it’s ‘against County Durham rights’. However, 26-year-old Kayley and Jordan think this would be the perfect bed for Kaylan, as due to his limited mobility and very limited eyesight, he is unable to get up if he falls out of bed.
Kayley said: “No one was there to support my corner and three of the pros who were at the meeting hadn’t even seen the bed we needed for Kaylan so I couldn’t even try to sell it to them. I gave the occupational therapist a list of pros and cons to read and she didn’t even read a single one.
“Two of them at the meeting hadn’t even met Kaylan before. They didn’t know what her mobility or mental state was like and were just repeating what the others had said.”
She added: “My heart sank. I thought we should just get up and fight for this bed.”
Later that day, Kayley and Jordan, who live nearby and are constantly helping with Kaylan’s care, set up an online fundraiser on JustGiving to try and raise £8,500 to provide Kaylan with a bed which she thinks he desperately needs and allows him to sleep safely in a bed on his own. Anyone wishing to donate a bed for Kaylan can do so via this link.
Sarah Burns, Integrated Commissioning Manager for Durham County Council and the County Durham Clinical Commissioning Group, said: “We would like to apologize to Ms Thompson for any upset caused during the visit. at her home and can assure her that was not the intention. We are very pleased to speak with her and her colleagues to resolve this matter as quickly as possible in Kaylan’s best interest.”
A County Durham and Darlington NHS Foundation Trust spokesperson said: “We are very sorry that Kaylan’s family is unhappy. Our multidisciplinary team, which includes a paediatrician, occupational therapist, physiotherapist and social worker, is working working closely with families to ensure that our care receives the safest and most appropriate equipment to meet their needs.We would welcome the opportunity to further discuss family concerns and they can contact our patient experience team on 0800 783 5774.”