I wish you knew how dramatically my views have changed about children’s hospice care. Don’t get me wrong, I’ve always had huge respect and admiration for the work that goes on in these incredible places, helping families in their hour of need. Nothing has altered in that respect. However, naively, I never thought it was something my family would need. It was for other people. How wrong was I.
EACH came into our lives shortly after the birth of my son, Sid, in May 2021. A congenital defect, Tricuspid Atresia with large VSD and ASD, was picked up in our 20-week anomaly scan and initially explained to us as potentially being incompatible with life or life-limiting. Nevertheless, Sid has proven a little fighter and never ceases to amaze us, despite having had numerous scans, emergency heart surgery twice, two stokes, infantile spasms and epilepsy. He also has to be fed by tube. I’ll never forget the first time EACH was mentioned to me, by a member of the palliative care team at Great Ormond Street Hospital. I remember politely saying ‘thank you’ but getting in the car and saying to my husband ‘that’s a place people go to die’. I didn’t want anything to do with it and hated the thought of us needing that support. My husband turned to me and said ‘he’s not born yet, let’s wait and see.’
Despite my grave reservations and massive apprehension, we did eventually visit Milton. I was tentative, to say the least, and it was something I struggled to come to terms with. However, our journey was underway and, after a couple of visits, I realised how wrong I was. Milton wasn’t what I thought it was going to be like. Far from being a dreary, morbid and negative place, it’s actually a very happy, beautiful and positive environment. It’s somewhere children are given an opportunity to live and not just about death. It’s about navigating life, making memories as a family and being helped and supported along the way.
Sid now has regular visits and, from our experience, it’s a place free of stress or trauma. The staff get it right every time – they’re so lovely, open and provide such expertise - and I always come away thinking ‘what a lovely, homely place’. It certainly makes our lives easier and I know I can ask for anything, or ask any question. At the beginning, I didn’t feel comfortable doing either. Sid loves being in the hydro pool and recently had his first play therapy session at home, which went incredibly well. We’ve also been to family days, as well as attending online and in- person events like Lullaby Nights and Winter Wonderland.
My daughter, Poppy, 12, has her own concerns. She’s always been anxious about going to the hospice and thought it was scary place, full of poorly children. However, the team have made some great suggestions to ease the situation. She’s had a swim with Sid – something she dearly wanted to do – and she agreed to come to Winter Wonderland before Christmas. So hopefully we’re getting there.
There are occasions when myself and my husband have ‘imposter syndrome’, because we feel the staff should be looking after children more poorly than Sid. It’s still a hurdle in my mind and we’re building up to overnight stays. However, if I’m honest, I feel a bit silly when I look back at the way I felt in those early days. Milton has been totally different to what I expected and if I knew then what I know now, I certainly wouldn’t have been so reluctant. If I could go back and speak to myself, I’d say ‘don’t be daft’. These children are living their lives and having fun along the way.
At the beginning of our journey, I remember seeing and reading things online that helped shift my perception. Since then, I’ve started my own Instagram account called Super Sid Wilfred. I post updates and videos and it’s a way of helping showcase all the fun, amazing things that happen at Milton and in Sid’s life. It’s only a small thing but I don’t want people making the same mistake as me.
Becky D, Sid’s mum