Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing.  Microcephaly can be present at birth or it may develop in the first few years of life.  It is most often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of fetal development.  It is associated with Down’s syndrome, chromosomal syndromes, and neurometabolic syndromes.  Babies may also be born with microcephaly if, during pregnancy, their mother abused drugs or alcohol, became infected with a cytomegalovirus, rubella (German measles), or varicella (chicken pox) virus, was exposed to certain toxic chemicals, or had untreated phenylketonuria (PKU).  Babies born with microcephaly will have a smaller than normal head that will fail to grow as they progress through infancy.  Depending on the severity of the accompanying syndrome, children with microcephaly may have mental retardation, delayed motor functions and speech, facial distortions, dwarfism or short stature, hyperactivity, seizures, difficulties with coordination and balance, and other brain or neurological abnormalities.  Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.  There is no treatment for microcephaly that can return a child’s head to a normal size or shape. Treatment focuses on ways to decrease the impact of the associated deformities and neurological disabilities. Children with microcephaly and developmental delays are usually evaluated by a pediatric neurologist and followed by a medical management team. Early childhood intervention programs that involve physical, speech, and occupational therapists help to maximize abilities and minimize dysfunction. Medications are often used to control seizures, hyperactivity, and neuromuscular symptoms. Genetic counseling may help families understand the risk for microcephaly in subsequent pregnancies. Some children will only have mild disability.  Others, especially if they are otherwise growing and developing normally, will have normal intelligence and continue to develop and meet regular age-appropriate milestones.  The National Institute of Neurological Disorders and Stroke (NINDS) conducts research relating to microcephaly in its laboratories at the National Institutes of Health (NIH) and supports additional research through grants to major medical institutions across the country.  A small group of researchers studying a rare neurometabolic syndrome (3-PGDH), which causes microcephaly, have successfully used amino acid replacement therapy to reduce and prevent seizures.  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=microcephaly+AND+human[mh]+AND+english[la]+AND+(review[ptyp]+OR+review+literature[mh]+OR+practice+guideline[ptyp]+OR+guideline[ptyp]+OR+clinical+trials[mh]+OR+clinical+trial[ptyp]+OR+consumerj[sb])&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=5+Years 1 http://clinicaltrials.gov/ct2/results?term= /disorders/microcephaly/pubs_microcephaly.htm /disorders/microcephaly/xml_microcephaly.xml xml_microcephaly.xml V100 The Arc of the United States

1825 K Street, NW

Suite 1200 Washington DC 20006 Info@thearc.org http://www.thearc.org 202-534-3700 800-433-5255 202-534-3731 Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. V42 Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane

Suite 104 Orlando FL 32814 betty@birthdefects.org http://www.birthdefects.org 407-895-0802 Non-profit organization that offers parents and expectant parents information about specific birth defects, their causes and treatments, support group referrals, and parent matching services. Provides information about environmental exposures that may be associated with birth defects. Sponsors the National Birth Defect Registry, a research project that collects data on birth defects and prenatal/lpreconceptual exposures of mothers and fathers. V41 March of Dimes

1275 Mamaroneck Avenue

White Plains NY 10605 askus@marchofdimes.com http://www.marchofdimes.com 914-997-4488 888-MODIMES (663-4637) 914-428-8203 Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy. V749 National Dissemination Center for Children with Disabilities

U.S. Dept. of Education, Office of Special Education Programs

1825 Connecticut Avenue NW, Suite 700 Washington DC 20009 nichcy@aed.org http://www.nichcy.org 800-695-0285 202-884-8200 202-884-8441