Lewis was 2 weeks overdue so I needed to be induced and after a long a stressful labour he was rushed into the neonatal intensive care unit (NICU) because he was blue. His blood sugar levels went down to 0.02 and the medical professionals couldn’t work out why.
Lewis spent 2 weeks in NICU. I noticed his head was getting bigger and after 7 days the hospital arranged for an ultrasound. This was followed by an urgent CT scan as something was seriously wrong with him. When I was told, I fell to the ground in total shock.
The next day, following the scan, Lewis was blue-lighted to another hospital where he was given emergency surgery as he had hydrocephalus, a build-up of fluid on the brain. A thin tube (shunt) was surgically implanted into his brain to drain away the excess fluid.
The following day Lewis had another scan to make sure the shunt was working and that’s when they diagnosed him with unilateral open lip schizencephaly – an extremely rare malformation of the brain. He was then diagnosed with septo optic dysplasia and was in hospital for 3 weeks.
At this point Lewis was only weeks old and we were being told that he would be wheelchair bound and tube-fed and would be unable to do much for himself. On top of that, he had been referred to the eye hospital where we were told he was blind.
I remember ringing my mum and saying ‘I don’t think I can do this’ but I had to pull myself together; he’s my child and I needed to be there for him.
My partner Frazer and I had two other children who were very young at the time. Daniel was 5 and Scott was 3.
When we came home we stayed with Frazer’s parents for a few weeks to try and get our heads around everything and try and come to terms with Lewis’ diagnosis.
We started to settle into life and then Lewis was also diagnosed with cerebral palsy and he began having seizures. That’s when we were referred to our local hospice, Charlton Farm.
We were very sceptical about visiting the hospice as all we could think was it was a place our child was going to die. But when we got there, it was another world, it was completely different to how we’d envisioned it.
It took Frazer a long time to fully trust others to look after Lewis, but for me, I felt so at ease with the staff straight away. They knew exactly what they were doing.
The sibling team was there for Lewis’ brothers, Scott and Daniel. To this day they have contact with the team and there are still some difficult conversations to be had with the boys about what involvement they’d like when Lewis passes away. They won’t open up and have those conversations with me as they won’t want to upset me.
I feel that Scott and Daniel have missed out on so much because I don’t have time to do anything with them, which is really sad. They have come to realise that a simple day out just can’t be done. For example, a day out to the beach would require 3 or 4 adults so it’s almost impossible.
When we stay at Charlton Farm I can be mum and take Scott and Daniel on days out to Clevedon, shopping at Cribbs Causeway, or out for a meal. They have made friends with other siblings and been able to talk to them about what they are going through and help them feel that they aren’t alone.
Every year, I sit down with Lewis’ keyworkers at Charlton Farm and review his end-of-life care plan. Being a practical person, I want to be prepared, and whilst I can talk about this easily now, the staff know I will need lots of support when that day comes.
It’s typical with someone with Lewis’ diagnosis not to reach adulthood and Lewis is showing signs of slowing down now. Medically he’s fairly stable, but his movement is slowing and he’s finding getting in and out of his wheelchair more difficult.
The older Lewis gets the more exhausting it is to look after him. He wakes frequently in the night, whether that’s to play or because he needs cleaning after a large bowel movement. No matter where we are, he has to have lights and music on through the night for comfort. If he doesn’t have this, he’ll become very upset.
When Lewis is happy he smiles and waves his arms and his hands and 2 years ago he became able to talk – up until then it was difficult to understand what he wanted. Following emergency surgery he was given a vagus nerve stimulation (VNS) device to control his epilepsy. This resulted in more communication from Lewis as there was less seizure activity. Slowly, he’s learnt to say very basic sentences which really helps me to know what he wants. This has made him much less angry and frustrated, which is amazing.
Sadly, Covid has put a stop to us visiting the hospice. We’ve been offered resilience stays but Lewis loves access to the entire hospice and doesn’t understand that there is limited access to the facilities as they’ve had to introduce ‘bubbles’ to safely care for other children and families.
I’m shattered and really miss my respite visits. I know the staff are always on the end of the phone and I have had some home visits from the care team. Hopefully we can spend time there next year.
Before Lewis was born I thought I had lots of friends but following his arrival we had lots of medical appointments and hospital visits and I noticed friends drift away. Charlton Farm introduced me to a new group of friends who I still see to this day. There’s one family who, pre-Covid, we would also book respite stays with – we’ve become the best of friends!
I am very set in my mind that Lewis is not to go anywhere other than Charlton Farm when it comes to him needing end-of-life care. Charlton Farm is my safe haven, it’s the place we can all be together as a family; it’s the only place I’ll want to be.