Hospice care is “invaluable” – a young mother’s story

Categories: Care.

I was referred to Haven House Children’s Hospice in Woodford Green when my son Jayden was 18 months old. He was born six weeks prematurely and was diagnosed with Lissencephaly – a rare neurological disorder. He suffered from seizures and visual impairment and needed round-the-clock care. 

Jayden was fed via a tube into his stomach and also experienced severe reflux. As a single parent I needed help and that was when Jayden’s Palliative Care Nurse introduced me to Haven House. 

Having never visited a hospice before, I had always imagined them to be depressing places where people went to spend their final days. However, Haven House is the complete opposite – it’s a lively, bright children’s centre. Straight away I felt comfortable and knew that I would be happy leaving Jayden there. 

Over the next five years he regularly went to the hospice for respite care and also had 10 sleepovers a year. All of this was completely free to me – which is incredible really as without the help and support of Haven House, I would have really struggled.
It felt like I was leaving him with my own family. I had so much confidence in the wonderful nurses and staff, that I was able to go away for my 30th birthday, knowing he was receiving the best possible care. 

He loved the specially equipped sensory room and his music therapy sessions as well as sitting outside watching the trees swaying. Haven House is such a calm, warm, peaceful place I can’t imagine feeling anything but contentment whilst being there.

On 19 December last year my world as I knew it ended when Jayden passed away in hospital aged just seven years old. 

As I sat watching him slip away from me the only thing I could take comfort from was that I could call Haven House and have Jayden transferred there after his death. He loved his visits to the hospice and it was the only place where I wanted to be.

On the next page Vanessa talks about how the hospice cared for Jayden after he had passed away and the support she received…

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