National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Adams-Oliver syndrome

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What is the life expectancy of children with this genetic disorder?
The long-term outlook (prognosis) for people with Adams-Oliver syndrome (AOS) varies depending on the specific signs and symptoms present in each person and the degree of severity of these signs and symptoms. In some cases the prognosis is excellent, although surgery often is needed to close the skull or scalp defects that may expose the brain.[1] It seems likely that mild forms (for example, those with only skin and/or skeletal abnormalities) are associated with a better prognosis and a normal life expectancy.[2] However, when people with AOS have congenital heart defects or severe problems with other organs or systems, the condition can be very severe.[3][2]
Last updated: 3/13/2017

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  1. Beryl R. Benacerraf. Limb Abnormalities. Ultrasound of Fetal Syndromes, Second Edition. Canada: Elsevier, Inc; 2008; 223.
  2. Nadia Iftikhar et. al. Adams-Oliver Syndrome. Journal of the College of Physicians and Surgeons Pakistan. 2014; 24 (Special Supplement 2):S76-S77.
  3. Southgate L, et. al. Haploinsufficiency of the NOTCH1 Receptor as a Cause of Adams-Oliver Syndrome With Variable Cardiac Anomalies. Circ Cardiovasc Genet. August, 2015; 8(4):572-581.