Chester's Story

Chester was born at 27+1 weeks very unexpectedly and was delivered at home by his dad, weighing just 1.18kg. He was rushed straight into the Neonatal Intensive Care Unit (NICU)and although at first he seemed to be breathing ok on his own, within 24 hours he had stopped breathing which lead to him being resuscitated. This in turn led to a grade 3 and 4 bleed on his brain.

Chester’s time in NICU was full of ups and downs and was a rollercoaster of emotions for us. He caught e-coli and had numerous blood transfusions, oxygen ventilation, lumbar punctures and ventricle taps to help drain the excess fluid on his brain.

After 102 days in NICU, Chester arrived home on oxygen. This was a scary time for us both, but our outreach nurse visited every week to help and support us. Each week we saw his oxygen dependency lower and eventually, after 3 months, Chester came off oxygen support altogether.

We were first told about Cerebral Palsy Cymru by our consultant Rachel, when we were discussing his coming home plan. Rachel mentioned about the charity’s early intervention service ‘Better Start, Better Future’ that helped babies just like Chester. Once we left the hospital, Cerebral Palsy Cymru’s family support coordinator, Glenys Evans, contacted us for an initial discussion, and it was only a few weeks later that we were booked in for our first session.

During our first visit, Gosia, one of Cerebral Palsy Cymru’s specialist therapists, and Glenys listened to our story and provided us both with much needed support, listening to our worries and concerns. They gave us exercises to help Chester develop based on what our goals as a family were. We felt a sense of relief and positivity coming out of our first session, that we were able to have that support and that the future was not so daunting.

Since that very first therapy session at Cerebral Palsy Cymru, we have seen a huge improvement in Chester’s development. When he first started his sessions, he would rarely use his right hand or turn his head to the right. However, thanks to the therapy he has received, Chester is now starting to use both his hands. The knowledge you gain by working alongside Cerebral Palsy Cymru’s specialist therapy team helps you understand how the brain works and why certain things may be a challenge for babies like Chester.

The help and support you gain from these therapy sessions are simply incredible. By using what we learn during the sessions at home, we have seen Chester go from strength to strength. He is a very determined little boy, and the early intervention therapy and family support has helped our family so much.

A lot of parents who have premature babies are worried about what the future may hold, and like us they simply want to give their child the best possible help and support.

‘Better Start, Better Future’ just does that – it gives parents the help and support they need to give their babies the best possible start in life.

We would like to thank everyone who has helped Chester on his journey so far. Without Cerebral Palsy Cymru, none of this would have been possible.

The support they have given to us as a family has been invaluable and they have given us so much hope.

We know that ultimately, this service is provided to families like us thanks to the donations that Cerebral Palsy Cymru receives, and that without ‘Better Start, Better Future’ we wouldn’t have Chester here with us the way he is today.”