Isla-Rae's story | Julia's House

When I went for my 27 week scan, I could feel that something wasn’t right (says Mum, Lucy). After scanning me, the consultant said, "We need to get these babies out right now." I barely had time to ring my partner Nik before they wheeled me into surgery. And within an hour of going in for my scan, the girls were here.

When they were born, both girls needed to be resuscitated. They were tiny. Isla weighed 700 grams and Esmae was 900 grams. I could cradle their head and body in one of my hands, and only their long legs would dangle over.

It seemed like they were doing well in NICU. But after a week of the girls being born, they took us into a room and told us that Isla had severe brain damage. They didn’t think she was going to make it. I was in denial about it at first and then I couldn’t stop crying all day.

That night they let me hold her for the first time because they really thought it would be the last chance. So I sat there and held her for three hours – I didn’t want to let her go.

Both of my parents passed away when I was young, and I always wear a locket with their pictures in. I put the locket in the incubator with Isla, and about three hours after putting it in there, she started tolerating food and she really turned a corner. It was like they were looking down on her. I don’t know how I would have got through if I’d lost Isla, and it made me think about how much support we would have had from my Mum and Dad if they’d still been here. It felt like I was grieving for them again.

Just as Isla was starting to improve, we got the news that Esmae had brain damage as well. They said she wouldn’t be as severely disabled as Isla, but she would never be able to talk, crawl or eat normally. Actually, Esmae shouts all the time now and she’s just started to roll over and eat solid foods.

It took a while for us to get our head around having two children with cerebral palsy and what life was going to be like. We were especially worried about our four-year-old daughter Alarna and how she might be affected. But Nik and I are both the kind of people who think, ‘Okay, that’s what we’ve been given and we’ll take every day as it comes.’ And that’s how we’ve been ever since.

For the first few months the twins were doing really well. Then, just before their first birthday, Isla’s lungs collapsed – she had a cold, pneumonia and flu all in one go. We nearly lost her. And for the next six months after that, she spent pretty much the whole time in hospital. They started talking to us then about our wishes for her end of life care because there’s only so much her body can take.

Since then, Isla’s needed to have oxygen at home. She has developed dystonia as well, which makes her muscles go really tense. She arches her back and twists her arms. There’s a lot of medication that we need to give her now, and I’m still feeding her every three hours through her tube – all day and night.

With all of Isla’s additional needs, we decided we needed more support because it was too much for me to cope with on my own. That was when we found out about Julia’s House children’s hospice. I felt a connection with Julia’s House straight away – the nurses and carers, the families, the whole feel of the charity – it was really lovely and just right for us. I love that Julia’s House comes out to the family home for community sits. For me, that’s so much easier. With everything that Isla needs, I end up packing up the whole house every time I go out.

When the Julia’s House nurse and carers come, I can go upstairs and just have a break. I’m up all night, every night with Isla. I end up feeling quite down and not myself because I’m so exhausted. To have that time – that three hours – just to recharge and have a lie down, or play with Alarna, is life-changing for me.

I get anxious about leaving Isla and trusting people, even though I do have family that offer to help. But with Julia’s House, I know she’s in safe hands and I can relax.

For me, it’s also nice to have the company. I can’t go out very easily with the twins and I don’t see many people because I worry so much about them getting poorly. A simple cold could put Isla in hospital again.

So it’s nice just to sit and chat to Nurse Jess and the carers. They understand what life is like with a disabled child and they have that experience to offer me advice and put my mind at rest about certain things. They show you ways of doing things to make life easier and it makes me feel a bit more confident in what I’m doing as well.

Having the support of the Julia’s House team is also incredibly important because of the time we’re given to spend with Alarna. I try really hard to give her one-on-one attention, but it can be difficult because the twins always need me for something. It sounds awful but she’s always put last. Alarna’s very independent for her age and she’s so good with the twins and never moans about them. But I know how much she loves and needs to have that quality time with me.

Alarna asks questions and I’m honest with her about things – I’ll say that Isla was born with a poorly brain and we’ve just got to make sure that she’s happy and comfortable. She’s protective of her sisters, and she does worry when Isla goes into hospital, but she won’t talk much about it.

What’s amazing about Julia’s House is they take care of siblings too, so Alarna has play sessions with Sibling Worker Tracey. Because Tracey is a trained play specialist, we’re hoping she’ll help Alarna open up about what’s worrying her. It means she’s got someone else who understands and is there to listen, which is so important.

Caring for Isla has changed us a lot as a family, and Nik and I have learnt so much in the last two years. I would never have entertained the thought of becoming a nurse or carer for disabled children before because of the worry of everything. But if I ever got the chance to go back to work, that’s what I’d like to do. Because I realise now how important places like Julia’s House are – especially for the parents, and for the sisters and brothers too.

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