Ive Got Guts

"We heard about the charity shortly after Tori was born, before we had any sort of diagnosis. It was lovely to read other peoples stories who were older and how they were coping with bowel issues. 

Gut issues we have found has always been a taboo subject, even when you’re 4! We feel this needs to be changed and raise to raise awareness of gut conditions. We got involved to show that gut conditions effect children as well as adults. But ultimately Tori is just like any other 4 year old you would meet, just with tubes, bags and lines."

Tori's story:

She’s only four years old, but Tori Gibbs has spent more time in hospital wards than most people do in a lifetime.

The toddler with a shock of curly, red hair and a wicked sense of humour was born with a neuropathic bowel and has battled her way through a host of operations, procedures and treatments associated with her troubled gut. 

Never able to eat and drink like other children, she has a feeding tube, stoma bags and is on long-term steroids. Her parents do not know if she will ever be cured, or what the future will bring.  

Tori was Holly Reed’s second child. She and her partner Jon were expecting everything to go similarly to the birth of their first daughter Annabelle and that Holly would return to her job as a support worker in due course. 

“But Tori didn’t open her bowels at all for the first two days of her life. I was breast feeding but it wasn’t going well. She screamed and screamed, was very stiff and would turn a very odd colour,” said 28-year-old Holly. 

“We were at the GP surgery continually for six weeks. The doctor found a heart murmur. At eight weeks, her heart stopped beating and she had to be resuscitated. She subsequently had a brain scan because she’d lost some of her hearing, and the ability to swallow, so had a feeding tube inserted.”

As the weeks went by Tori wasn’t tolerating any feeds so a nasojejunal tube was inserted into her small bowel through her nose so that she could be given liquid food, water and medication. 

“She was still screaming continuously and was sick a lot,” said Holly. 

From this point things didn’t get better

Her weight plummeted from the age of 9 months and on her first birthday Tori was admitted to hospital for a TPN (Total Parenteral Nutrition) which is used when patients cannot get nutrition through eating because their intestins cannot absorb nutrients properly. A central line was placed into a large vein inside her heart. 

By the time she was two years old, the toddler had spent most of her life in hospital, facing one medical procedure after another and many a moment when her life hung in the balance. Her mum stayed with her in hospital for those two years, leaving her older sister at home with their dad and grandparents. 

“By the time she was two-and-a-half, Tori wasn’t yet talking because of her temporary hearing loss. But in many ways she was a typical toddler – into everything,” said Holly.  “The big difference was that she had never been able to eat or drink. Her stomach had to be kept empty on free drainage and she had never opened her bowel normally.”

Now Tori is fed with formula through a surgical feeding tube overnight. In the daytime she has progressed to eating a low-fibre diet of biscuits, yoghurt, chocolate mousse and requires up to 2.5 litres of fluid with extra sodium to keep her bowel from working. She is on hourly blood sugars, and goes hypoglycaemic every day.

“We don’t know what the future holds,” said Holly. “In the last year she has been diagnosed with associated bladder condition. We know things are going to change as she gets older, we just don’t know how. Lots of people have different theories as to what’s wrong but Tori doesn’t seem to fit into any box.”

Tori's condition has impacted the family in many ways

The effects on Annabelle have been noticeable. “She was two when Tori was born and I didn’t see her very often – just at weekends. It was awful. She really struggled. 

“Now (aged six), she is very aware about Tori but she finds it challenging. As a family we have lots of emergencies when the ambulance comes. It’s regularly a life or death situation. She has seen things you wouldn’t want any child to see at that age  

“It’s become a way of life for all of us – we keep plodding on. 

“As for Tori, she’s amazing - happy, clever, hilariously funny, such a diva. But when she’s unwell it’s a reality check. 

At 19 months she got chickenpox – a normal child’s illness. She was fine. Then she went into a hypoglycaemic coma.

“There have been times when family looked at her and didn’t know if she would ever pull through - but no one said it at the time. 

“She’s very vocal about everything. She’s overly aware of what she needs, and how she is feeling. She’s very sociable and has managed to make many little friends in hospital.  She knows what she can and can’t do and just accepts it. She is just beginning to question why there’s no one else like her.

“She’s been going to nursery school since she was three and that’s going well with a lot of support. I don’t know what will happen when she goes to school. 

“Our main concern is to make sure she is supported enough to do what she wants to, just like everybody else her age.”