|
|
What is velocardiofacial
syndrome?
- Velocardiofacial
syndrome (VCFS) is a complex syndrome generally involving palatal
defects, heart defects, learning disabilities and distinct facial
features. It has been associated with over thirty different characteristics.
The name comes from Latin: "velum" meaning palate, "cardia"
meaning heart and "facies" meaning face.
- The severity
of the presentation varies widely among affected individuals.
- VCFS can
also be known as Shprintzen syndrome, DiGeorge syndrome or 22q11
Deletion.
- VCFS is autosomal
dominant meaning that a parent with the syndrome has a 1 in 2
chance of passing it on to their child.
How is velocardiofacial
syndrome treated?
- Because VCFS
can present differently in different children, it is important
that a knowledgeable team of specialists evaluate a child so that
nothing is overlooked. The child should be seen shortly after
birth by the nurse from the Craniofacial Center to establish adequate
feeding and breathing. Swallowing problems in infancy are common
in this syndrome. Within the first two months of life, the child
should be seen for a full team evaluation.
- Genetic testing
is available for VCFS.
- Palate surgery
takes place around 10 months of age (see Cleft
Palate Only).
- Regular cardiology
examinations should be done to monitor and treat any heart conditions.
- If there
is evidence of developmental delay, the child should be referred
to an infant stimulation program to receive thorough developmental
testing and appropriate interventions. In California, parents
should contact their local Regional
Center. Such programs are federally mandated and are available
to all eligible children regardless of income.
- A child with
VCFS may encounter social and emotional challenges unique to this
condition. Support organizations and resources are available for
children and their families (see Support
Information and specifically the VCFS
Educational Foundation).
|
|
