Isla's story | Julia's House

“When Isla was born very prematurely at just 24 weeks she was so tiny, she fitted into the palm of her Dad’s hand. She weighed just 517 grams and was 28cm long – smaller than a ruler.” (Georgia, mum to Isla aged 3)

Family and friends were asking me if she was okay, but I didn’t know. I hadn’t seen Isla – she was just gone and I didn’t get to hold Isla for a week.

When we were finally allowed skin-to-skin time she pretty much lived inside my top for the next six weeks. Isla was moved from NICU to the Special Care Baby Unit, but something was clearly wrong. She was deteriorating and her heart rate and SATs would just plummet for no obvious reason.

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I noticed that when Isla cried it sounded like a tiny little mouse. They discovered that her heart was compressing her windpipe and she had an operation at six months old to move her heart away from her lungs. Then even more heart surgery.

We were in and out of intensive care for months and Isla spent the whole of her first year in hospital including her first birthday, and her first Christmas too.

Her older sister, Darcey, was just two years old then. We were trying to create all the Christmas magic for her at home in the morning, before dashing over to see Isla in hospital. Then we had to leave Isla in hospital to go back home to see Darcey and we felt so guilty again. It was a really stressful, horrible time.

Isla was 13 months old when she finally came home. But just one month later we were back in hospital with COVID and suspected chicken pox. Darcey had just got used to her little sister being at home and she was gone again. Isla deteriorated so quickly. Her body was shutting down. Her heart rate plummeted, and she had a big cardiac arrest. They had to use a defibrillator to shock her tiny heart.

It was really scary. We didn’t think she would make it. She had significant brain damage and we still don’t know if it was caused by her being so premature or that big cardiac arrest.

That winter she had lots of respiratory problems but they let me take her home on Christmas Eve. That was our first Christmas all together, just the four of us. It wasn’t an easy time, but we were just so happy, especially after that summer when we didn’t think Isla would make it – to spend Christmas together at home.

Caring for Isla is relentless. You can’t leave her at any point, you’ve always got to have your eyes on her because she can be a pickle and pull on her oxygen tube or suddenly get really poorly.

She is constantly attached to oxygen, so we have to carry her oxygen tank everywhere we go and check her levels and heart rate regularly.

She’s also connected to her feed pump for her main nutrition since her big cardiac arrest as her stomach shut down. She has oral tasters but sometimes her tummy doesn’t tolerate them. I went upstairs to get some washing the other day and came down and Darcey was holding a tea towel under her neck and saying, “It’s okay, she’s just been sick so I got a tea towel.” She’s a very good little nurse.

Julia’s House is so important. While Isla’s with her Julia’s House nurses and carers, I can be me for a couple of hours. It kind of re-sets you. You take a break, tick off some jobs, and then you’re ready to start again.

Darcey has fun with her Julia’s House Sibling Worker who understands what life is like for her with a poorly sister and James and I have both seen a Julia’s House complementary therapist as carrying Isla around can cause a lot of muscle strain. When we all go to the Julia’s House family events, it’s a lovely opportunity to meet other families who understand the strains and stresses of caring round-the-clock for your very poorly child.

Life with Isla can be exhausting – it’s physically and emotionally hard. You can have a plan of what you want to do, but Isla ultimately decides. She’s the boss.

We don’t know what the future looks like – she’s just constantly surprising everyone.

We didn’t expect that Isla would ever walk or talk. But recently, she called out to me and said “Mama.” I just cried. She says it all the time now. It’s so lovely.

Isla can’t crawl or stand independently – she sits up and shuffles to where she wants to go – but we tried her with a walker for the first time in a physiotherapy session and she managed to take her first steps. Darcey was calling to her to make her come towards her – it was very sweet.

We’d love for Isla to walk comfortably with her walker at home by Christmas. She’ll be able to scoot around and investigate all the lights and baubles.

But we try not to get our hopes up and we don’t look forward to anything; we just wait until the day to get excited.

Isla can suddenly get very poorly and then we just have to drop everything and get her to hospital. Until it’s Christmas morning and we’re all at home together unwrapping presents under the tree, I won’t believe that it’s going to happen.

Isla’s having an operation to have a tube fitted into her brain to measure the fluid levels soon. If there is too much fluid on her brain it might cause her go backwards from what she’s already learnt – and that would be really hard after all the progress she’s made.

We do feel very lucky with how well Isla is doing now. She could have another cardiac arrest at any time, but we just try to do nice things together and make the most of the moments we have.

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