The moment Sienna was placed into our arms, everything changed. What should have been a happy first cuddle felt different almost straight away. Rhys was the one who noticed it first. As he adjusted her in his arms, he saw that her tiny arm didn’t look as it should. She was missing her thumb and the lower bone in her arm, her radius. After months of weekly scans and reassurance that everything was fine, it came as a complete shock.
From that moment on, life felt like it was moving at a pace we couldn’t keep up with.
We already had three children, and we knew how to parent. But nothing prepares you for being told your baby has multiple disabilities. Over time, we learned that Sienna is deaf in one ear, has a fused spine, kidney complications, and heart defects. Hospital appointments became part of our weekly routine. New specialists, new diagnoses, new worries, it felt endless.
“We were falling apart,” Rhys says, and he’s right. As a couple, as a family, we were barely holding things together. Routines disappeared. The house became overwhelming. My mental health took a huge hit. I blamed myself constantly. I convinced myself it was something I’d done, medication I’d taken for my epilepsy, something I’d missed or done wrong during pregnancy. I wanted to give up. I felt like a failure, like I hadn’t protected her properly.
Rhys was struggling too, but neither of us knew how to say it out loud. That was when Home-Start West Berkshire came into our lives. They were recommended to us through our local family group, and honestly, we don’t know where we’d be without them.
Home-Start offered us a volunteer who would come to the house to see us once a week. Her name was Georgina. She didn’t come to judge or tell us what we were doing wrong, she came to help, listen and support us when we were at such a low point in our lives.
“They helped us get back on track,” Rhys says. “With routines, with the kids, with everything.”
Home-Start gave us so much more than practical support. Through their groups, we met other parents who truly understood what we were going through, volunteers who knew British Sign Language, and they helped us access other services and groups for Sienna. We were supported through medical appointments, with difficult decisions about surgery, and the emotional weight that comes with it all. They were amazing. They also gave us moments of joy we didn’t think we were allowed to have anymore, family days out, activities with the children, and time to just be together.
For Rhys, Home-Start helped him open up for the first time. “I never used to talk about my feelings,” he says. “Now I do. And it’s helped my mental health more than I can explain.”
For me, it lifted the shame. I learned that needing help didn’t mean I was failing. It meant I was human.
Now, things feel different. Sienna is thriving. It is amazing how children adapt. This is her normal, she just gets on with it. We have learned to adapt too. We’ve also learned to advocate for her. And with thanks to Home-Start, we have started to believe that there is light at the end of the tunnel.
It’s not easy, but it’s manageable. We know we’re not alone. If it wasn’t for Home-Start, we honestly don’t know where we’d be.