Meet Charlie

Our lives changed unimaginably when our second son, Charlie, was born. It was a traumatic delivery, which required significant resuscitation and left him severely brain damaged. On top of the grief and the life we had imagined, we were also dealing with the worry of how we were going to manage the specialist care he needs and also how we would cope financially. What should have been a magical time I instead found myself drowning in referrals, appointments, paperwork and stress.

I was referred to Haven House and Becki, their family support worker, helped me navigate through and see the wood from the trees. She helped me understand that I could manage this and how we could deal with all the challenges we would face. I was thrown into the unknown and had to quickly learn practicalities of looking after my seriously ill child. This meant tube feeding, oxygen and medication management as well as still looking after our other son Dylan who was just two years old at the time.

The hospice offered us step down care, which gave us the help and support to find our feet. I had started to feel there was some hope and then unfortunately after three days Charlie was admitted back into hospital again. After that, the first month at home was especially difficult. I was awake sometimes for 36 hours straight, it was a tough time. I had an unsettled toddler, I had a baby requiring masses amounts of care, I had a husband who was at work as he’d used all his holiday and sick leave. Haven House were there when we needed them and offered us support at home. This meant a nurse that we were familiar with would visit us in our own environment. Being at home was great for Dylan, I could try to get some routine into our lives so that he too felt settled and happy by having his brother home. There was a lot of stress and anxiety in the beginning and a change in the household. So being at home together with some nursing support meant that I could do things like put Dylan to bed and offer some normality. It was so important in making the transition as smooth as possible.

A play co-ordinator from the hospice visited us regularly to give Dylan some attention so that I could focus on Charlie. We were in our environment and for a family that makes a huge difference in being able to cope better.

I’m in awe of the care we have received from Haven House, not only for Charlie, but for me too. They helped in so many ways, when I was tired from a lack of sleep and eased my worries. Knowing someone is there for you is reassuring when your life has been turned upside down.

Mum, Ananda

One of the therapies has been especially beneficial for Charlie and that has been the therapeutic yoga. Since the yoga Charlie has been more alert, his development has been better and his breathing has improved and overall, he’s been more relaxed. I’m so proud of Charlie and what he has achieved through the yoga. Just the other day he sat up independently for the first time which I am completely overwhelmed with.

Haven House have not only provided me with specialist nursing care but also holistic care. They have supported every element of our lives really and I don’t think we would be here if we hadn’t had that. I can’t thank them enough.

“Mum, Ananda, supported Charlie in sitting up independently, and it was so beautiful to watch. There was this calmness as he tried to work out what was happening in this new position….”

Haven House Yoga Therapist Grace.