Parents and carers of people with CHARGE face many challenges. One of the most significant is the need to work with a large number of different professionals - such as doctors, physiotherapists, social workers, teachers, and Benefits Agency staff to name just a few!
As one parent said: "We were amazed, and somewhat annoyed, to discover that whilst our son was having a scan for his nose, involving a general anaesthetic, the doctors didn't think of looking at his ears at the same time! So he had to have yet another general anaesthetic quite unnecessarily."
Usually it is the parents who must co-ordinate and make sense of all the advice that comes from the professionals and translate it into the week-by-week, day-by-day, and minute-by~minute care of their child.
Research supports our experience that CHARGE is an extremely complex condition. One case study found that a child, aged I5 months, was involved with 19 different professionals from 12 different bases (representing Health Social Services, education, and a voluntary organisation) Another study looked at a large group of young children with combined vision and hearing loss - including a small number with CHARGE the study found that those children with CHARGE had a far greater number of different anomalies than children with other causes for their disabilities
The immediate problems facing most new-born children with CHARGE are life threatening, which means that medical intervention has to be carefully co-ordinated between different medical professionals. For example most of these children reed repeated surgery and investigations, which means that they will have to undergo several general anaesthetics in a very short space of time. Some of these children have had more than ten in less than two years. The risk from such procedures is always high so it would be helpful wherever possible to combine them under one general anaesthetic.
Historically many young infants with CHARGE have rot received early input from therapists and educationalists. And yet there is a real need for members of these professional groups to become part of the child's support team as soon as possible after diagnosis. This is rot just to ensure the best possible development for the child but also to help to minimise the devastating impact of repeated hospitalisation, and surgery, which are so characteristic of the early lives of these children. It cannot be stressed strongly enough, that as well as keeping families informed professionals also need to explain to carers the importance of establishing a consistent and appropriate communication system with their child as early as possible.
Parents of children with CHARGE often need to work with very large groups of professionals Unfortunately these different groups rarely work in an effective, co-ordinated way leaving it to the parents to organise and make sense of all the advice and information that is thrown at them. Often it is the parents who find that they have to educate the professionals -- some of who may not have met a child with CHARGE.
All of this requires a lot of hard work on the part of the parents, plus a strong and assertive character, and a certain level organisational skin. Additional support from somewhere outside the family is therefore crucial for some parents so as to minimise stress and to maximise success.