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1. Imagine that the parents of a child with special needs in your area are concerned about his/her education. Think about how you could assist them as a healthcare practitioner.
2. In her story Louise says "Next thing, I had an appointment with a consultant. Thinking this was about her "clicky hip", I went along to discover my doctors and health visitor had suspected she had this syndrome."How could Louise’s GP and health visitor have best prepared her for that first appointment with a consultant?
1. What warning signs or factors might alert a midwife or neonatal nurse to the possibility that a newborn might have a genetic syndrome?
2. Find out what range of symptoms a child with cri du chat syndrome might have.
3. Cri-du-Chat syndrome is associated with deletion of part of the short arm of chromosome 5. The deletions can vary in size from a few base pairs to the entire short arm and evidence exists to suggest that the size of the deletion is related to the severity of symptoms. Find out what you can about how the size of the deletion might relate to the range of symptoms.
4. Louise talks about the special educational needs school that her daughter goes to as being “an amazing special needs school which she loves”. Who is responsible for ensuring that the educational placement is appropriate for a child with special need?
5. Louise stresses the importance of parental support groups. Find out what type of support is available in your area and what information could be used to enable parents to find an appropriate group?
6. What information would you give the family about reassurance risk for any future pregnancies? How would you find out this information?
"When I first had my daughter, as a new parent, you think what she is going to be like? What will her firsts words be? When will she take her first steps and what school will she go to?""After she was diagnosed with cri du chat, it was more a question of will she walk? Will she talk? Will she go to a 'normal 'school? It will be a long time before these questions are answered."
"To improve the care of any family with a child with learning disabilities, what is required is improved communication."
"Tell parents what is going on, so they can mentally prepare themselves and look for support as soon as possible."
"My local GP surgery failed to tell me anything about my daughter and her condition."
Contact a Familywebsite
US National Library of Medicine, Genetics Home Reference - Cri-du-chat syndrome