Ben's story

When I was 23 weeks pregnant, I was told I was 3cm dilated and that my baby boy could be born at any moment.

After a 3-week stay in hospital, Ben was born at 26 weeks weighing 2lb 1oz. The amazing NICU team were there for Ben as soon as he was born. Almost immediately he was ventilated, and after half an hour or so, we were able to meet our little boy for the first time.

After 94 days in hospital, and a few days before his original due date, Ben was discharged. He endured a few nasty infections, 3 blood transfusions, a lumbar puncture, and 3 periods of ventilation. Being discharged whilst Ben still required oxygen was daunting, but we had amazing help from our outreach nurse, Sarah.

It was Sarah who first put us in contact with Cerebral Palsy Cymru following Ben’s General Movement Assessment. We understood that because of Ben’s extreme prematurity, his muscles had not had the opportunity to flex and push in the womb, as instead he had been stretched out in an incubator! This had resulted in Ben’s motor development possibly being delayed and Sarah suggested that Cerebral Palsy Cymru and their early intervention service ‘Better Start, Better Future’ would be able to help.

I first got in touch with Cerebral Palsy Cymru when Ben was around 6 months old. Glenys, their lovely Family Support Coordinator, spoke to me for almost an hour initially finding out more about Ben and our family. We felt supported straight away and I didn’t hesitate when Glenys offered us the opportunity to attend some therapy sessions.

During our first session, we spent 2 hours with 2 of the therapists and Ben. What I remember most was the kind and patient approach that the therapy team had, as well as the gentle and individual therapy they suggested for Ben. After chatting with us as a family and watching us interact with Ben, they were able to suggest exercises that would work with what we were currently doing at home already. This was so enlightening for us as it didn’t feel like ‘therapy,’ it was just small adaptations to our normal routine with Ben. We left that initial therapy session on an absolute high and haven’t looked back since!

The playgroup sessions at Cerebral Palsy Cymru have also become an integral part of Ben’s early life. It has been wonderfully reassuring to meet other parents who have had little ones born with some of the same challenges as Ben. It’s so nice to see babies and toddlers who have come on a similar journey, and seeing them so happy and calm, is a huge comfort. Caring for a baby born early like Ben can feel extremely lonely at times, but at the ‘Better Start Together’ playgroups, we don’t feel so alone.

Reflecting on Ben’s journey so far has made me feel so grateful. From our first phone call with Glenys up until our recent therapy sessions, Ben has made such astounding progress and we know it is down to the wonderful support and help that we have received from Cerebral Palsy Cymru.