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Diseases

Genetic and Rare Diseases Information Center (GARD)

Miller-Dieker syndrome


Other Names for this Disease
  • Miller-Dieker lissencephaly syndrome
  • MDLS
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Your Question

My baby has Miller-Dieker syndrome and I would like to know how long he might live.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is the long-term outlook for people with Miller-Dieker syndrome?

Many children with Miller-Dieker syndrome (MDS) do not live past age 2, and only a few may reach age 10. The oldest known person with MDS lived to age 17. In general, life expectancy is related to the severity of the lissencephaly.[1] The most common cause of death is aspiration pneumonia, caused by poor control of the airways.[2]

The developmental outlook is poor for all children with MDS, but varies slightly based on the degree of the brain malformation.[1][2] The highest developmental level in affected children is the equivalent of about 3 to 5 months of age, even with good seizure control. Very rarely, a child may be able to sit without help. Children with poor seizure control may function only at or below the level of a newborn.[1]
Last updated: 5/18/2016

References
Other Names for this Disease
  • Miller-Dieker lissencephaly syndrome
  • MDLS
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.