» What does the future hold for my child?

Most babies with de Lange Syndrome have frequent chest infections and are usually difficult feeders. In many cases these problems are either caused or worsened by gastroesophageal reflux and improve when it is treated. The few children with the syndrome that have very serious and complicated abnormalities of the heart may die before they are five years old. However, most children and adults with the syndrome are fit and healthy and, from the information that we have at the present time, their lifespan may be close to that of their siblings but could be 10+ years shorter. We are now seeing the progress as adults of first generations of CdLS people that we have known since the Foundations were in existence. As always, it depends on managing complications, above all else. It is unlikely that individuals with the Classic de Lange Syndrome will be able to live independently or have a job but adults with the Mild de Lange Syndrome may be able to live on their own and have jobs in sheltered workshops.