Wednesday, 21 June 2017

Reducing Baby Brain Injuries.

A very interesting report from the BBC this morning concerning the rates of brain injuries sustained by babies in the UK during labour.  This report really resonated with me because 30 years ago my own son was born with severe brain injuries partly due to a foetal heart trace showing severe distress, not being monitored correctly and therefore not acted upon.

As I say, my son's birth was 30 years ago and I was aware of other families at the time who's children suffered similarly.  Although there was a great deal of publicity at the time surrounding my son's injuries and we knew from the lawyers who successfully sued the North Staffordshire Health Authority on our behalf that the medical and nursing professions were aware of these problems nationwide, it seems that it has taken until now, with God only knows how many children's lives decimated, for someone to do something about it!

As readers of this blog will know, I run Snowdrop for Brain Injured Children, - a child development agency who provides programmes of developmental stimulation for brain injured children.  We have been operating now for 10 years and during that time I have heard story after story from families who say that their baby's heart monitor was either ignored, or not interpreted correctly.  This amounts to hundreds of children that I can account for where parents have legitimate questions to ask in this area.

According to the BBC's report, the major issues are "problems with accurate assessment of foetal wellbeing during labour and consistent issues with staff understanding and processing of complex situations, including interpreting baby heart-rate patterns (on traces from CTG machines)"

This is a shocking situation in it's own right, but the fact that I can account for this situation being prevalent for the past 30 years makes it even more disturbing.  Children's lives are being decimated and therefore so are the lives of their parents and wider family.  Let's hope that this report brings an end to the situation, - but I very much doubt it!

Wednesday, 14 June 2017

West Syndrome - Infantile Spasms.

Today we met a lovely new family from Lithuania who have a 12 month old little boy who has West Syndrome.  He has a complex combination of seizure activity, including 'infantile spasms.'

Despite 3 courses of steroids the spasms persist and indeed he had one during his initial evaluation at Snowdrop today.  One of the drugs he is on, 'Sabril' has almost certainly contributed to the demise in his visual function but the spasms and steroids combined have caused developmental deterioration.  I was able to see videos of him prior to his problems coming to light and he was a vibrant, interactive little boy, who was no comparison to the little boy we saw today.  Hopefully as the steroids wear off, some developmental function will return but we also hope that the programme of stimulation we are prescribing will have a beneficial effect, - helping to rebuild abilities.  I will keep you posted.

Saturday, 3 June 2017


What is autism? Autism is described as a 'spectrum disorder' which means that the problems experienced by a child at one end of the spectrum can be totally different in severity and complexity to those experienced by a child at the other end of the spectrum. It is actually a collection of symptoms which when they co-occur, we call autism. One of the distinguishing symptoms of autism is sensory processing problems and these can take many forms. Some children can be 'oversensitive' in terms of vision, hearing, touch, whilst others can be undersensitive. In some children the sensory system creates it's own stimulation, much as it does visually when a migraine sufferer experiences a visual display and these children see, hear and feel things which aren't present in the environment. Some children experience synethsesia where sensory modalities become 'cross-wired' and noises may for instance be experienced as colours. Snowdrop's approach has been very effective in treating the sensory processing abnormalities experienced by many children.

Another huge factor which many children with autism experience is problems with controlling attention. If you imagine attention as a 'spotlight' which has smaller beams of light at either side of it, then in a normally functioning person, a stimulus moves into one of the smaller beams and this then alerts the spotlight which immediately moves to focus on it. In a person with autism, the spotlight may be too powerful and the smaller beams not powerful enough, meaning that the child over-focuses attention on one stimuli and the attention of the child can be very difficult to capture. In another case, the attentional spotlight may not be powerful enough, meaning the child has difficulty maintaining attention on any stimulus. Again, Snowdrop has vast experience in dealing with such problems and many children have benefited from our approach.

Children with autism produce behaviours based upon the world they perceive. How can a child make eye-contact when he finds it threatening in sensory terms, or cannot control attentional resources? How can a child understand and produce language when he finds the frequency ranges which speech sounds occupy to be excruciatingly painful, or if he cannot regulate his attention to expose himself to the conversations going on around him, therefore not exposing himself to those speech sounds and not processing them? How is a child expected to socialise when he finds the world around him to be a grotesque chaos of sensation? Is is any wonder that children with autism are often described as 'being in their own world?'

The primary aim of the Snowdrop programme is to normalise sensory processing, so that the input pathways to the brain are carrying the correct information and the little one is able to see, hear and feel the world as you or I do. It aims to restore normal control of attention, so that the child then begins to learn appropriately and produce more balanced developmental performance through the output pathways of language, socialisation and gross and fine motor performance.

If you want to find out more about our approach to autism, come and speak to parents who have children on our programme. We have a private Facebook group, which you need an invitation to join. Simply email us at expressing an interest and giving us the email address which is connected to your Facebook account and we will send you an invitation. Membership of the group is limited to two weeks for parents whose children are not on the programme or our waiting list.