Isla-Rae’s story

IN SAFE HANDS

Like two pearls in a shell, Isla-Rae and her twin sister Esmae were so tiny when they were born, that Mum Lucy remembers cradling their head and body in just one of her hands. Now, two and a half years later the family are taking each day as it comes with Julia’s House by their side.

When I went for my 27 week scan, I could feel that something wasn’t right. After a minute scanning me the consultant said, ‘We need to get these babies out right now.’ I barely had time to ring their dad, Nik, before they wheeled me into surgery. Within an hour, the girls were here.

When they were born, neither of the girls were breathing and they needed to be resuscitated. They were tiny – Isla weighed just 700 grams and Esmae was 900 grams.

After a week of the girls being born, they told us that Isla had severe brain damage. They didn’t think she was going to make it. I couldn’t stop crying. 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 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 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.

Just as Isla was improving, 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, that’s not the case – Esmae shouts all the time now and she’s just started to roll over and eat solid foods.

TAKING EVERY DAY AS IT COMES

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 try to just take each day as it comes now.

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 – day and night.

“What’s amazing about Julia’s House is they take care of siblings too, so Alarna has a Sibling Worker just for her, who understands how she’s feeling and is there to listen and spend time with her” FINDING JULIA’S HOUSE

With all of Isla’s additional needs, we needed more support because it was too much for me to cope with on my own. 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.

I get anxious about leaving Isla, but when the Julia’s House nurses and carers come I know she’s in safe hands and I can relax. I’m up all night, every night with Isla, and I end up feeling quite down because I’m so exhausted. So for me, having that time to take a break and lie down, or do something fun with Alarna – it’s life changing.

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 for me, it’s also 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 reassurance.