Ben was born on Monday 8th February 2010 at 1314 hours, a much wanted, 2nd child, and twin to Leo, born just one minute before Ben. It was quickly evident that Ben had breathing difficulties, and rushed to neo natal intensive care. It was 8 hours later before Bens mum and dad saw Ben, for the first time. Ciara was wheeled into intensive care, Leo on her chest, Andy by their side, to see their little fighter, very ill, and on an oscillating ventilator. Day by day, Ben fought various battles, trying to change ventilation settings, trying to do time off ventilation, having a tracheostomy at 5 weeks old, numerous blood transfusion, respiratory arrest at 10 weeks, cardiac arrest at 13 weeks, two moves to other intensive care units, a CATs transfer by air ambulance and back to Great Ormond Street Hospital, major surgery for placement of a permanent feeding tube, after keyhole surgery failed, insertion of broviac line for regular antibiotics, as being in an intensive care unit came with monthly chest infections, failure of broviac line, trialling over 6 portable ventilators, while trying to meet developmental milestones. Ben was in intensive care for 17months from birth, only seeing Leo, his twin three times throughout this almost year and a half. Ciara, a dual trained nurse, took a career break from her post, so that she could care for the twins, Leo at home in the morning, then have a grandparent come to their home, take over Leo's care at lunchtime, travel 30 miles to Ben in intensive care, for the afternoon, travel home again at teatime to see Leo, meet Andy for dinner after his work, and go back down to Ben until almost midnight, and throughout the night if Ben was acutely unwell, trying to manage bills, two newborn boys, washing, ironing, grocery shopping etc, everything all families do, but not while having a newborn living in intensive care.
So at 17 months, Ben, his first time in the car, came home to his mummy, daddy and twin, along with a huge support team. Their home quickly became a mini intensive care unit, with strict guidelines on readmission and parameters, even having a telling installed for regular reviews with specialists from the regional children's hospital. Ciara and Andy were taught highly skilled techniques such as anaestheticslly being able to breathe for ben while off the ventilator to administer nebulisers (4 times a day), or to carry out chest Physiotherapy, but it was quickly evident that ben was thriving in the home environment. While significantly developmentally delayed, Ben is now 6, is fully ventilated at home on a portable life support, with a custom made tracheotomy, has epilepsy, but has so much determination, and an infectious personality that he would put many of us to shame. Ben is a wheelchair user, and has recently learnt to selfpropel, which is huge for his independence, is trialling an electric wheelchair in his special school, he can bum shuffle, climb up and down off the sofa, he cannot weight bear through his legs, PEG fed, fully dependant on for transfers, doubly incontinent, fully dependant on assistance with hygiene, showering and dressing. Ben uses a standing frame, and gait walker, and is assessed by his local health trust and regional hospital, as requiring 24 hour skilled supervision.
Ciara and Andy owned (mortgaged) their own home which, had everything been "ok" with their twins, would've been their home for a lifetime. While their home was manageable for Ben when he was/is young, as he got older, his equipment increased & got bigger, the layout was getting more and more difficult. Bens room had to be downstairs, in an open plan home, it was difficult to ensure Bens privacy and dignity. Bens "room" was off the open plan sunroom room/kitchen/dining, which worked well for community nurse to have access to a toilet, kitchen for tea/coffee overnight, but left it open for Bens twin to receive negativity from visiting friends as his brother "slept in the kitchen".
A huge surprise came when the twins were three, Ciara learned she was expecting again (the twins were fertility babies-so this was a huge surprise!), then at 32 weeks pregnant Andy was admitted to hospital for an instrumental spinal fusion, resulting in ciara doing all the lifting and transfers for Ben. Ben, being incontienent, is bathed at least daily, in an upstairs bathroom, while pregnant, and resuming 3 days post Caesarian section.
Ciara and Andy began to look at the options of extending the family home to accommodate Bens growing needs, but it was quickly recognised that extending would hugely increase their mortgage, beyond affordability, would outprice the house, out of the development, and their home wasnt suitable for extension due design of the plot 7 house type. They spotted land for sale just 2 miles from their home, with full planning permission, within remortgage budget. They took the tentative step to chat to the local planners, to assess if panning would consider a change of house type to that approved to meet bens needs if they were successful in buying the land, they agreed, the land was bought, and plans put in place to being resubmitting plans suited to Bens needs, and selling their current home. During this time it was agreed that Ciara and Andy would take over direct management of Bens care: meaning that instead of trust children's nurses looking after Ben 7 nights a week to allow Ciara & Andy (Ciara who had returned to work in order to maintain her legal requirement to be allowed to practice, and Andy having to give up his job to become a full time carer to all 3 children to sleep), Ciara would become Bens nurse, staying awake 7 nights a week, sleeping during the day/evening, while Andy, Ciara's mum, and a close friend to help manage their care package, which Ciara described as the best option, rather than her travelling over 60miles twice a day, 4-5 times a week for 30-40 hours per week, irregular shifts, as a senior nurse in a private hospital, while also doing ad hoc night shifts with Ben up to 3 nights a week on top of her contracted hours.
So, their home was agreed as sold, papers signed, when they learned that they couldn't achieve a mortgage, as local self build mortgage companies, did not approve of Ciara's direct payment employment, as she is not self employed not employed by the health trust, but does adhere to PAYE, and is accountable to the trust finance team.
As a result, with the equity of the sale, they have managed to get their bespoke home to wall plate, and are living in a mobile home on site.
We are hoping to crowd fund to achieve Bens much deserved home. A home where Ben can grow and continue develop, in a safe accessible environment. Where he has his own bedroom, a suitably equipped wet room, a hoist system for transfers, his own sensory room, as he can't use a public soft play due to the infection risk, a built in swim spa for daily hydrotherapy, and again social integration with siblings as he could never go to a public pool, for safety and infection issues. Level access that he can move around his home, independently in his wheelchair, with wide enough doorways to do so, a lift to access upstairs to visit his brothers rooms, and be fully integrated. To give Ben, the very unique child that he is, the opportunity to be independent in a suitable, enriching environment, where he can learn to turn on and off the radio, tv, lights through his accessible iPad, which he currently uses solely for speech.
It is believed that there are no other children like Ben in the UK or Ireland, with his level of need, skilled one to one medical supervision, or condition. You've no idea how much we appreciate any support you could offer us, our quality of life for Ben would be life changing.