"I still send our Neonatal Outreach Nurse photos of Rayvenn" – Zoe’s story

Rayvenn spent 24 days on the neonatal unit before we were discharged home. It would take about 40-45 minutes for us to get to the hospital from where we live, it was a lot of driving for weeks. I’d be up there all day and then come home in the evening because I still had three other children in the house as well. 

Rayvenn would have a team of sometimes five or six different doctors, but they would often do their rounds and then they’d be gone. That was really difficult because the information they gave us was very factual. We spent a long period of time not knowing whether our baby would survive. 

While on the unit, Rayvenn was seen by a dietitian because she was tube fed. She’s still peg fed now. The Dietitian was very hands on, making sure she got the right nutrients. I’m glad she was on board from the very early stage because it wasn’t just as simple as giving your baby a bottle and then you’re fine until the next. At the time, you’re kind of like this isn’t natural or normal. 

I wasn’t offered any psychological support until Rayvenn was nine months old, before she went into open heart surgery. But I’d already had almost nine months of being on my own and having to deal with the day to day. 

Our Neonatal Outreach Nurse stayed with us for 12 months in the end. She came once a week to visit us to begin with. She was always available on the phone if I ever needed anything, if I had any worries or concerns, she would literally come to my house. 

She put us in touch with the Occupational Therapist and got the ball rolling with Physiotherapy. She even helped with Rayvenn’s Disability Living Allowance form. The Neonatal Outreach service is so, so, so important. I wouldn’t want to see that disappearing. 

These are all services I didn’t realise existed. You kind of feel you’ll be on your own, but it hasn’t been like that. Rayvenn’s Occupational Therapist comes out all the time to check the specialist chair she needs to help her as she’s grown. It’s just one less thing I’ve got to worry about on top of everything else. 

The Welsh Government need to invest in more staffing to provide a top tier quality of care to babies, parents and carers. They’re so severely underfunded, short staffed and so severely overworked. They’re underpaid. 

What neonatal staff do is absolutely incredible, when you think they’re looking after these tiny lives that have issues and complications. It must be so scary for them, even though it’s their job. Staff AND parents need access to psychological support.  

They also need to invest in more overnight rooms for parents to remain close to their babies. There’s no worse feeling than leaving that hospital without your baby and having to wait until the next morning to go and see them.  

Thank you so much to Zoe for sharing her story.  

Read our Neonatal Services for the Future in Wales manifesto.