Dominic’s Story

After an unexpecteded premature rupture of membranes at 27 weeks Dominic made his arrival into the world 5 weeks later at 32 weeks on 29th May 2006 by emergency Caesarean section. Despite being 2 months early he was a healthy 4lbs 9oz and was breathing himself and in pretty good condition considering. We spent 3 weeks in SCBU where apart from the occasional bout of jaundice he fed well and gained weight and we felt very lucky that despite the abrupt end to the pregnancy we had a lovely healthy little boy.

. Over the next few months we expected some delays with his development due to the prematurity but we began to notice something more than that for example him not using his right arm and reaching for toys or showing any signs to want to sit up. At 8 months having been referred to a paediatrician, an MRI scan of his brain showed that Dominic had Periventricular Leukomalacia (PVL), a brain injury most often associated with premature birth. It’s an injury that affects the white matter in his brain. The white matter sends messages from the brain to the muscles. The messages that Dominic’s brain sends to his legs (and, to a lesser degree, his arms and hands), are jumbled up. This manifests itself as constantly tight muscles (spasticity). As a result of the PVL, the paediatrician diagnosed Dominic with cerebral palsy.

Subsequently we have been given a diagnosis of a mixed picture of cerebral palsy, Quadraplegia affecting both legs and arms especially right arm with signs of dystonia in his upper limbs as well. Soon after the diagnosis our lives changed forever. We revised our dreams for him but loved him even more than we thought possible.

Immediately Dominic started to attend Physiotherapy, portage sessions, Occupational therapy, Speech and language therapy and Hydrotherapy sessions and these were often on a weekly or fortnightly basis. Regardless of how much therapy he had received that week Dominic never so much as cried, whinged or refused to cooperate. He continues to work so hard at all the therapy he attends and amazes all the therapists and reps he may see at how he is willing to have a go and how much Stamina he has.
Very soon after his diagnosis Dominic started at School for Parents at Ingfield Manor in Billingshurst. (You can find out more information about them in the Therapy section). He then moved onto Ingfield manor Pre school 3 days a week in Sept 2009 which has been amazing for him both physically and in developing his character.

Now in Dec 2010 Dominic continues to amaze us with his determination and drive to do things that we perhaps know his body won’t easily be able to do. He has an amazing sense of humour and is a delight to be around. Cognitively he has developed really well and has now started a maintream school fro 2 days a week as part of a split placement with Ingfield Manor school.

As Dominic was getting older his physical limitations and obstacles were becoming more apparent and the spasticity in his legs is preventing him from attempting any form of independent walking. He was commando crawls around protected environments and making attempts with independent long and crossed legged sitting. In Jan 2010 we were at a stage where we had to make some decisions with his treatment moving forward to help prevent or minimise the risk of problems with his hips and subsequently lots of orthopaedic surgery in the future. Our options were, continuing with Botox injections to his inner thighs, oral Baclofen or Baclofen administered with a pump that is surgically implanted. All of which will help temporarily relax the spasticity in his legs. Another option was investigating whether he is was a suitable candidate for a Selective Dorsal Rhiziotomy at the St Louis Children’s hospital in USA this should permanently take away the spasticity in Dominics legs but is approx £40000. Dominic was accepted for this surgery and over the course of 4 months we managed to raise £50k to get us there and give Dominic the opportunity of a lifetime.
Details for all these treatments can be found on the therapy page on this website.

Our blogs from our trip to the US can be found on the St Louis Diaries page.