How to proceed?

A child with CdLS demands a lot of time, attention and energy. You will visit the hospital regularly because your child needs extra care. It will take some time before everything goes back to normal. That is not surprising. Your life has been shaken up. You need time to find your feet again.

It is good to make those around you aware of what Cornelia de Lange syndrome entails. Our community can help you with this. On this website, you will find a lot of information, useful addresses and practical tips. You will also find other parents here - benefit from their knowledge and experience!