Logan’s mum Liz shares with us their story...
“Logan was born in the summer 2010 after a healthy pregnancy. His labour was rapid and it was immediately evident something wasn’t right. He was admitted to the neonatal unit for investigation and it was here he had his first clinical seizure. Testing revealed he had suffered a subarachnoid haemorrhage (a type of stroke) in utero and as a result had severe hypoxic ischemic encephalopathy (severe brain damage). He now has severe Spastic Quadriplegia Cerebral Palsy, Epilepsy, Microcephaly, Dystonia, CVI (cortical visual impairment) and has a tracheostomy and gastrostomy. He also has a wicked grin, you can see he has a cheeky side and a good sense of humour.
Logan spent 21 days in intensive care and was discharged with a bag of medicines and medical equipment. It was a very daunting and isolating time, adjusting to life with a new baby is complicated enough without seizures, feeding issues, chronic reflux and a baby who didn’t behave the way other people’s children do. When Logan was coming up to one year old it was clear his brain injury had affected him severely, and we started looking beyond the early intervention services and therapy which had dominated our life until that point. It was then we received a referral to Charlton Farm after our local palliative care team identified we were in desperate need of some specialist respite.
Being referred to a hospice was a bit of a shock, we had only had experience of adult hospices and you know that’s where people go to die. We were hesitant in filling in our paperwork, almost as if we didn’t fill it in we could change the future.
We were invited to visit for an afternoon, it wasn’t anything like we could ever have imagined. Charlton Farm is in the middle of the countryside, it’s green, it’s lush, it’s quiet. When you enter the building the air of sadness you expect isn’t there; it’s inviting, colourful, everyone is smiling and welcoming. The children have their own rooms set up specifically for their needs in the least clinical way, and they accessorise rooms for each child who visits, that care and attention to detail is never unnoticed. Families can stay too and we look at it as a little family holiday, the facilities for the rest of the family are as well thought through as they are for the child they are caring for.
The respite CHSW provides gives us something to look forward to, it gives me time where (if I want) I can detach myself from Logan’s care and focus on being ‘Mum’. We can spend time as a couple, a valuable ‘reconnecting’ time, we can’t access specialist babysitters and our care package isn’t flexible enough to allow us both out at the same time. It allows us to give his siblings time to do things which are usually challenging around Logan’s complex needs and routine. The Sibling Team support them in accessing play, so we can sit down with a hot cup of tea. I know in time they will also be valuable in supporting us when the difficult questions start. The support the team at Charlton Farm give us is incredible, nothing is too much trouble and the care they give Logan is exemplary. Handing over his care is not the easiest, practically or emotionally but knowing the staff are highly experienced and well qualified is really reassuring and instils great confidence not only for us but for Logan too.
The hospice is like a second home, Logan’s little brother and sister run freely and burn off their energy (eventually!) and we have met some incredible families and members of staff. We’ve become part of something special, a family we would never choose, but now would never be without"