Cornelia De Lange Syndrome is a relatively rare syndrome that can affect children of all genders and races across the world. This article provides a guide to Cornelia De Lange Syndrome, and in particular to the life expectancy of a baby born with the syndrome.
Cornelia De Lange Syndrome is a genetic disorder. It has both physical and psychological symptoms. Physically, children with Cornelia De Lange Syndrome tend to have a distinctive facial shape: thin eyebrows, an upturned nose, a close knit looking brow and thin lips that are turned downwards. Smaller heads, lower birth weight (Cornelia De Lange Syndrome sufferers usually weigh less than 5 pounds at birth), and (occasionally) shortened or missing forearms are other common characteristics of Cornelia De Lange Syndrome. Children with Cornelia De Lange Syndrome may be slow to develop both physically and psychologically and they can also display behavioural characteristics such as repetitive behaviour, autism and self-destructive behaviour (such as banging their heads on the walls in frustration). Gastroesophageal eflux when eating and visual or eye problems also often acoompany Cornelia De Lange Syndrome.
A child born with Cornelia De Lange Syndrome will usually be expected to live well into adulthood. However, there are certain factors associated with Cornelia De Lange Syndrome which can limit their life expectancy. The most common such factors include heart defects and gastroesophageal reflux. As such, children with Cornelia De Lange Syndrome will need to be monitored regularly in order to ensure that these symptoms do not become life threatening or life limiting. In regions where healthcare is good, a child with Cornelia De Lange Syndrome will usually be able to live a longer and more comfortable life as their symptoms can be treated quickly and effectively. It is therefore important to note that the life expectancy of a child with Cornelia De Lange Syndrome will depend not just on the severity of the symptoms associated with the syndrome itself (whilst around 80% of sufferers experience gastroesophageal reflux, for example, not all do), but also on the healthcare system that the sufferer is using.
Experts recommend that as well as receiving medical help, children with Cornelia De Lange Syndrome also are provided with psychological support. Usually, a team of specialised educators, speech therapists and psychologists will be on hand to help the parents to support each child. Their aim is to ease the developmental delays (for instance, delays in speech and learning) and the frustration and autistic behaviour that are very often associated with Cornelia De Lange Syndrome. Often it is found that promoting the psychological wellbeing of a a Cornelia De Lange Syndrome sufferer will help to dramatically improve their overall wellbeing and thus their life expectancy.