Cri Du Chat Syndrome (CDCS) is a relatively rare genetic condition with an estimated incidence of between around 1:37000 to 1:50000 births. There are more children being diagnosed now that genetic testing is carried out more frequently and is more accurate. The most distinctive characteristic, and the one for which the syndrome was originally named, is the distinctive high-pitched, monotone, cat-like cry. “Cri du chat” is French for “cat’s cry”. Most children with CDCS will have feeding problems from birth including failure to thrive, poor sucking and slow weight gain, as well as speech problems. Significantly delayed physical and intellectual development is also common.
Every person is unique, and people with genetic conditions are no exception. It is hard to know exactly what Cri du Chat will mean for Claire, just as it is hard to predict the abilities of any child before they reach milestones. What we do know, is that Claire’s development has not been and will not be at the same pace as ‘typically developing’ children.We also know that Claire will require more focussed attention and support than most typically developing children to reach milestones that would come naturally to the majority of the population.
Becoming parents of a child with a genetic condition has come as a huge learning curve for us! We are often asked to explain the syndrome in ways that are well above our own scientific knowledge! If you are interested in reading more about the genetic make-up of people with this syndrome, the information here is quite succinct. For nerds like me, it is actually quite interesting :).
If you would like to read a summarised version about the syndrome, you should check out the brochure that has recently been developed by members of the Cri du Chat Support Group of Australia. I really like the way the information is shared in such a positive way in this resource and I recommend that anyone with an interest in Cri du Chat Syndrome takes a look.
If you would like to get a more detailed view about what it is like to be a part of a family living with Cri du Chat Syndrome, you can’t go past the family stories page on the Cri du Chat Support Group of Australia website. These pages gave me a much better picture of what life with Claire might be like that any medical text book or wikipedia site ever could.
Here are some blogs that I also like to read that share experiences of living with CDCS.
Oh…and this one of course! 😉
For more comprehensive information about Cri du Chat Syndrome, please visit the website for the Cri du Chat Support Group of Australia.