Julia’s House has been by mum Erica’s side since Isabella was first born with a rare condition that causes chronic lung disease. The past year has been a difficult one for them both, as Isabella’s condition has deteriorated and she now needs a ventilator to help her breathe. But this didn’t stop the Amesbury youngster from celebrating her fourth birthday recently with the biggest of smiles.
“Just before her birthday last year, Isabella got really poorly and she had to go into hospital,” says mum Erica. “She came out just before lockdown started, but the illness had a knock-on effect. She’s constantly on oxygen to help her breathe but now she needs a lot more, as well as a ventilator overnight.
“Imagine if you’ve run a marathon, you’d be huffing and puffing, but that’s what Bella is like all the time.
“I’ve spent three years ignoring the doctors and nurses when they’ve wanted to talk to me about end of life care for Bella,” says Erica. “I just couldn’t bear to think about it. But this last year, I’ve had to do it. Because if she keeps declining the way that she is, I need to be in the right frame of mind if something happens to her.”
How Julia’s House is helping
Julia’s House senior team nurse Neil came to visit Erica in Salisbury Hospital soon after Isabella was born. Along with other Julia’s House nurses and carers, Neil’s continued to visit the family in their Amesbury home since then to provide medical care and play sessions for Isabella, and essential breaks and support for Erica.
“It’s just me and Bella, so when the nurses and carers from Julia’s House come it’s a chance for me to take time out to do simple things by myself, or just sit and chat with them about everything that’s going on,” says Erica.
“They’ve seen me at my worst, so they know how to talk to me like a human and I can be open with them when I’m struggling with something. We’ve had a few difficult conversations since November. Sometimes when it gets too much for you, you can talk to them and that bubble that’s going to burst just decreases a bit until the next time when you talk to someone again.”
She says, “I like that we have our routine where a nurse and carer comes every Tuesday, but it’s helpful to know they’re always there whenever I need them too. I had to have a kidney stones operation last year and Julia’s House went above and beyond for me. They sorted for someone to come out and look after Bella and stay, just so that I could rest. I don’t know what I would have done without them.”
Care for Isabella
“Isabella really looks forward to her Julia’s House visits – she loves all her nurses and carers,” says Erica. “They’re not scared to look after her, whereas other people would be.
“She gets tired and out of breath easily and she’s always attached to oxygen, so we have to carry that everywhere with her. But the wires are quite long, so she can still do a lot of the things that other four year olds would. They’ll take her out to feed the ducks, or play on the swing and seesaw. Or they’ll just do some painting and play indoors.”
She adds, “You’d think that with everything she’s gone through she wouldn’t be happy, but she is. She’s clever and sassy and funny. And she’s just happy all the time. She never lets what’s happening stop her.”
