Physically, disorders of the corpus callosum are conditions that do not change. Once the infant’s brain is developed, no new callosal fibers will emerge. Nor will the existing callosal fibers degenerate, unless an individual gets an additional degenerative neurological condition.

ACC/DCC does not have a single cause. In fact, there are multiple factors that may be involved in disrupting the formation of the corpus callosum. Among the suggested causal factors are genetics, metabolic disorders, and structural interruptions. Brain cells may not get the chemical guidance needed to grow in the right direction, possibly because of a faulty gene. Similarly, the nerve cells may not reach their destination due to lack of oxygen, poor nutrition, toxic chemicals (for example, alcohol or drugs), infections, or metabolic disturbance. Finally, the development of the corpus callosum may be stopped by some other developmental process that interrupts the initial crossing-point of callosal fibers. In these individuals, DCC may be accompanied by cysts or lipomas. There are no known medical conditions in which DCC is always present. Some of the conditions in which DCC is usually present are: Aicardi Syndrome, Shapiro Syndrome, Acrocallosal Syndrome, Mowat-Wilson Syndrome, and Toriello Carey Syndrome. Some of the conditions in which DCC is sometimes present are: Fetal Alcohol Syndrome, intrauterine infections, maternal riboflavin/ folate/ or niacin deficiency, Dandy-Walker Syndrome, Andermann Syndrome, Arnold-Chiari II Malformation, Holoprosencephaly, Hirschsprung Disease, Occulo-Cerebro-Cutaneous Syndrome, Menkes Disease, Hydrocephalus, and others.

FAQs Archive - Page 2 of 3 - National Organization of Disorders of the Corpus Callosum

Q: What kind of treatments or therapies does my child need or what treatments will help?

The early years of childhood present a crucial window for developing neural pathways in the brain. Early intervention after a diagnosis in infant or young child is very important. Local school districts offer early intervention services or search for private clinics or resources for birth to age 3 in your area. Your pediatrician should be able to put you in contact with local service providers. Some of the services you may receive include PT (Physical Therapy), OT (Occupational Therapy) & SPI (Speech Therapy). Early intervention resources can be found at the National Early Childhood TA Center website . Contact the Department of Developmental Disabilities in your area for information about respite and/or rehabilitation care services for your child. Typically, you need to schedule an appointment for the intake meeting that determines qualifying for services.

Q: Why does my child have DCC?

Many parents worry that they may have caused their child to have brain damage or may fear that it is a condition that will recur in future children. In addressing those questions, it is important to remember that it is usually impossible to establish the reason a child has DCC. Genetic testing may reveal a genetic abnormality or syndrome that is the underlying cause of the DCC. In these cases, the parents or the individual with DCC will want to consult a genetic counselor prior to becoming pregnant with another child. In the absence of an identified genetic abnormality, it is extremely difficult to find a specific cause of DCC. Multiple possible causes appear to exist, and genetic testing does not always reveal what that cause might be. If it is not genetic, it was caused by something that happened during the first trimester of pregnancy. While it is understandable that parents will want to know “why this happened,” in many cases they may never know. Therefore, it may be important to shift the focus from asking “why?” to asking, “what can we do to cope with the diagnosis?” and “how can we best help our child?”

Q: Who can diagnose a DCC?

DCC must be diagnosed by viewing the brain, either with MRI, Computerized Axial Tomography (CT-scan or CAT scan), or pre/post-natal sonogram (ultrasound). Among these, MRI is clearly best to see DCC and any other brain abnormalities. Absence of the corpus callosum can be seen at any age after the critical period of prenatal development. A neurologist or other physician may request an MRI or CT scan of the brain. An obstetrician or neonatal specialist may request an extensive pre-natal or post-natal sonogram or MRI. The pictures typically will be examined by a neuroradiologist or pediatric neuroradiologist, who will write a report describing any unusual findings. A neurologist or other physician also may examine the scan and diagnose DCC. If that is the case, it is always wise to have a neuroradiologist re-examine the pictures to verify the diagnosis and carefully assess for any other possible abnormalities. DCC itself cannot be detected by amniocentesis.