Jess’s story

Cheeky, content, and extremely determined, Jess might only be six years old, but she’s been through more than most young girls her age. Jess has had three major spinal operations, and at just 17 months old she was fitted with a tracheostomy to help her breathe. Mum, Stacey, talks about the journey they have been on and how vital support is from Chestnut Tree House when you have a child who needs round the clock care.

“We had no idea Jess would be so poorly”

Jessica – or Jess as I like to call her – was born a healthy baby, but after a week we realised something wasn’t right. She was very quiet, and she wasn’t moving very much. Scans showed Jess had developed an abscess on her C1 and C2 vertebrae, which was compressing the top of her spine. She was basically paralysed. Things progressed quite quickly after that and at just 24 days old, Jess underwent her first spinal cord decompression surgery.

“It’s safe to say the last six years haven’t been easy”

Jess is now six and a half and she’s undergone three spinal surgeries which have resulted in a severe spinal cord injury. She also has a dislocated hip, and a fused jaw which means her airway is unsafe. To maintain a safe airway, Jess has a tracheostomy – a tube inserted into her windpipe which helps her breathe. This means she requires 24-hour care. However, despite all this, Jess is the happiest, cheekiest, most beautiful little girl, inside and out. Anyone who meets her falls in love with her. Her smile and her laugh are so contagious.

“Finding out Jess needed a tracheostomy turned our lives upside down”  

Jess was 17 months old when we were told she’d need a tracheostomy. I had become a single parent and Jess was still undergoing treatments for her spine and sleep apnoea. I knew what having a ‘trachy’ meant and the level of extra care needed, and I just kept thinking – how am I going to do this alone? That’s when I first heard about Chestnut Tree House. I didn’t really understand what a hospice was though, or how it could help. But I thought to myself, let’s give it a go.

I remember our first visit like it was yesterday. Everyone was so friendly, and the facilities were amazing. All the other children and families looked happy, and no one was treated any differently. We even got to meet Peter Andre – one of the charity’s Patrons – who was visiting for the day, so I was pretty happy about that!

“At Chestnut, I can take my medical hat off and just be me”

Having a tracheostomy can make accessing normal activities challenging for Jess because she needs constant supervision, but at Chestnut they are all specially trained to be able to look after her. I never see Jess as excited as when she’s at the hospice and we’ve joined in lots of activities, from circus acts to bubble shows, and even a festival this summer with live bands, dancing, special wristbands, and the most amazing atmosphere.

The fact that I get to stay with her as well is an extra bonus. I know she’s just downstairs or at the end of the hallway having fun, and I get to just do nothing. I get to be mum, not carer. I can take my medical hat off and just be me. Relax. Sleep if I want. Knowing all the time Jess is being looked after by an incredible team.

“Towards the end of 2020, we were told to prepare for the worst”

Things can change very quickly when you have a child as poorly as Jess. In the lead up to Christmas 2020 she became seriously unwell and we were in and out of hospital while they tried to work out what was going on. Finally, an MRI scan showed that Jess had severe spinal cord compression again. We spent that Christmas in hospital with her while we waited for an operation on her spine. We were told it was more complicated than her last operations and to prepare for the worse. Thankfully, it couldn’t have gone any better. However, it meant Jess had an unstable c-spine again and the only way to keep her safe was for her to be put into a halo brace. She had eight pins screwed into her skull and attached to a jacket, so her head was always straight and still.

“In difficult times, the support we get from Chestnut makes all the difference”

As you can imagine, seeing Jess in halo brace for the first time was a shock to me and my family, but when the Chestnut community nurses visited, they helped put us at ease. Jess was rolling around, laughing and smiling, and soon the halo disappeared as the first thing we saw, and all we could see was Jess. Happy and smiling as always. And wow, what a difference that made!

During their visits to the house, I was able to get some rest and just those few hours did me the world of good. They also arranged for crisis care, so that Jess and I could stay at the hospice and have a break. Without those stays and Chestnut’s support, things would have been very different.

“Chestnut Tree House is there for our whole family”

The extra mile everyone goes to for Jess is evident. But it’s not just the patient they care for, it’s the family as a whole. My mum, Jess’s nanny, works as one of her carers and she stays at the hospice with her too. We like to take it in turns. And as a family we are so grateful that we have somewhere where we can go and spend quality time together. A place where we can relax and just be Nanny and Mummy and Jess. Those precious moments and memories mean the world to us.