Sitting in the hallway of the hospital with her new friend, I watched as Isla grabbed some crayons and started colouring. She was two years old then and the Great Ormond Street Hospital, London, was like our second home, while doctors ran tests to figure out what was making Isla so unwell.
I sat on her bed waiting for her to come back when she was ready. She hadn’t had an easy start in life and it made me so happy to see her playing with another toddler. But when she came back to me, she had crumbs around her mouth.
‘My friend had a biscuit, but I didn’t have any,’ Isla assured me.
My heart sank, but I tried to make light of it. Maybe she’d get lucky. Maybe a few crumbs wouldn’t cause her crushing pain. But I knew from experience that anything Isla consumed made her violently ill – every little bite of food or sip of drink had devastating consequences.
At first she seemed OK. Then Isla started to scream in pain, clutching her stomach. I would have done anything to take that pain away from her but it was too late. All I could do was soothe her as those crumbs made their way through her system.
It was clear from day one that something was wrong with my baby. Scott, 35, and I were so happy to be expecting another baby after the healthy arrival of our son, Jack, now eight. But after a C-section, Isla was taken into intensive care. She refused to feed so doctors had no choice but to put a feeding tube down her nose.
In the first few months of her life, she was sick 100 times a day. At five months old, they decided it was reflux and operated to tie her stomach around her oesophagus so she wouldn’t be sick anymore.
But still she screamed with pain, refused to eat and depended on a feeding tube.
Isla was referred to Great Ormond Street, where the best consultants in the world continued to test her. She had cameras down her throat, she was sedated while they force-fed her and observed her reaction. They put dye through her system so they could track her digestive speed. I hated every second of it, but we had to find a diagnosis.
Eventually, they diagnosed her: chronic intestinal pseudo-obstruction – a complex bowel condition that was like Crohn’s disease, with inflamed and ulcerated bowels and colitis all in one – and worse than all three put together.
She was fitted with a Total parenteral nutrition, or TPN, line that supplied nutrients straight into her bloodstream through a vein, bypassing the digestive system.
Put simply, her digestive system is broken.
It’s been a journey. And Isla’s condition has made me realise that so much of what we do is centred around food. Eating and drinking is a part of everyday life, but it’s also how we celebrate, how we commiserate, how we unite. For Isla, there will be no birthday cakes or ice-cream in the summer. No hot chocolate when she’s cold. No popcorn at the cinema, no leaving out the sprouts with the Sunday lunch.
We don’t have family meals where we catch up over a home-cooked meal. Scott and Jack eat together, then I eat later. We don’t think it’s fair to make a big thing of meals when Isla can’t eat.
But Isla, who is now five, doesn’t complain. As I sorted her stoma bag recently, she looked at the array of medical kit she can’t live without and asked me: ‘How long do I have to have all this?’
‘Well, it keeps you out of hospital,’ I said.
‘OK,’ Isla said. ‘I’ll have it a while longer then.’
It breaks my heart to think of all the moments in life she’ll miss out on.
It was the doctors at Great Ormond Street who urged us to familiarise Isla with the texture and smell of food, so she didn’t develop an aversion or fear of it. At first I thought it was cruel to teach Isla about food she can never eat, but it’s been the making of her.
We bake cakes together, because she likes to decorate them, but she can’t even lick the bowl. We play a game called ‘cupcakes’ together where you have to find two cards with matching cupcakes on from an array of different illustrations. She loves food, but understands it’s not for her.
Isla loves a tea-party. She is never happier than when she’s feeding someone else some play-dough food. ‘Yum!’ she says, spooning pretend food to her dolls. Her favourite smell is salt and vinegar. She has a China tea set and a picnic basket, and every day her dolls will be treated to a tea party. If something looks tasty, like cherries or strawberries, she feeds them to me, then watches as my eyes widen in enjoyment.
When Jack is complaining about broccoli, Isla will say: ‘If I could, I’d eat broccoli. It looks delicious!’
She gives Jack chocolate mini eggs, picking out the pink ones to save for her dolls.
Jack is so protective of her. When Isla started nursery at the same school Jack attends, her teacher reported back to me that Jack popped in to check on her every day. Jack gets upset if she gets upset. When she’s lying on the sofa in chronic pain, unable to move, Jack will pretend to fall over in front of her to get a giggle from her. When I miss out on doing things with Jack because Isla has to go to hospital, he says: ‘Don’t worry Mummy, I know you have to be there for Isla.’
I don’t know how she always has a smile on her face. When she falls over, she doesn’t even cry. It makes me realise how much pain she tolerates on a daily basis.
There’s no known cure. Unless there’s a miraculous discovery, Isla will never eat or drink.
The TPN line is a huge strain on her organs because bypassing all the organs ordinarily involved in digesting food leaves them at a greater risk of failure. By not giving them their job to do, they can just pack up. While the TPN line improves her quality of life short-term, it is also a big strain on the kidneys. But she has no other choice.
It would make such a difference to the outcome of her life if she could just tolerate a little fluid or a morsel of solid food. That’s why we’ve tried so many feeding trials at the hospital. Just in case.
Isla just wants to be a normal little girl. She wants to wear leggings but can’t because the waistband would rub the stoma. She wants to paddle in the sea but she can’t because she’s prone to infection. She wants to sit with her friends at birthday parties and eat cheese and pineapple sticks.
All she can do is just keep on smiling – and that’s something she does perfectly. We try to do something fun every day, whether it’s a trip to the cinema or playing the cupcake card game at home.
I’ve learned so much from my five-year-old. We’ve all learned not to take our health for granted, not to complain. Even when she’s not well, she tries so hard to smile. I know I wouldn’t be smiling if I had to go through what she faces.
She’s already spent most of her life in the hospital. They want to run tests to try to help her, but she’s never well enough to take the tests. They’re going to try again in September.
Isla’s taught us the good in other people too, as friends and charities like Wipe Away Those Tears (wipeawaythosetears.org) have stepped up to help make Isla’s life a little easier. She’s had over 50 general anaesthetics in her short life and two dashes to the emergency room in the last month alone. I don’t know how she’s still smiling, but smile she does.
Ashlee Johnson, 30, lives in Grays, Essex with her husband Scott, 35, and kids Jack, 8, and Isla.