David Newton, Cerebal Palsey

The speaker this evening was David Newton, who told of the touching and sometimes trying experiences of being a parent of a child born with Cerebral  Palsey.

David’s son Raphael was born with Cerebral Palsey. It is a condition that results from a brain injury or infection prior to birth. David cited three conditions that result from the condition, the prevalent of which is spasticity. 1 in 400 children in the country suffer in varying degrees.

The medical profession have a responsibility to preserve life in a foetus after 23 weeks. Raphael was born just short of 24 weeks. At this point the baby fitted into the palms of two hands. He had to have several bouts of brain surgery to insert tubes to allow the draining of fluids from the brain and lumbar puncture to relieve pressure on the spine.

David showed pictures of Raphael in an incubator in hospital in Bristol, listening to classical music on an MP3 player. Raphael spent the first six months of his life like this, a period that seemed interminable to his parents.

Once home, while all the advice given to David and his wife by professionals was always given in good faith to be helpful, the advice did not always match their experience. They found themselves having to be quite firm in pointing out that some advice was not going to work. David quoted several examples of this. Raphael can see and hear normally, but he has problems with muscle control, and the harder he tries the worse the problem gets.

As might be expected, the reactions of others to Raphael varies completely across the spectrum, from completely ignoring him, to pretending that there is no problem, to over sympathising, to getting it right (which David implied was fairly rare).

The support services available from the State are difficult to access. David had the impression that authorities avoided giving help as a means of staying within their inadequate budgets. They were reluctant to take into account the experience of the parents when recommending equipment, preferring a “one size fits all” approach. In contrast some professionals were just that and very helpful.

Several Charities had been a great help; Riding for the Disabled, had given much support that resulted in Raphael having much more success at sitting up. Our Club provided a variation on a tricycle called a “race runner” that enables Raphael to move around independent of his wheelchair. (which because of his lack of muscle control, he has to be strapped into.)

Looking after Raphael is a full time job and getting enough sleep is a problem for both parents, so much so that David had had to give up his job and become self employed, so that he was in control of his work/family duties. The situation has eased recently through the provision of a full time nurse from the authorities.

Obviously, lack of muscle control makes speech impossible. Communication is made possible by a eye gaze camera, but this became another example of bureaucracy; they were not allowed to use the kit for Raphael’s education and had to go out and buy one for that purpose, for which it is essential.

To finish on a happy note, having noted how well Raphael reacted to and with animals, his parents have just bought him a puppy and the relationship is developing nicely - just great to see the photo above!!

John Walden