Wrong Yet Again!

The doctor called last night with the results of the Fetal MRI.  Our baby does NOT have Schizencephaly.  They believe it is Dandy-Walker Syndrome (DWS).  DWS is not as severe as Schizencephaly so the prognosis is better.  HALLELUIAH!  They still will not know to what degree he/she will be affected until after the birth.  Once he/she is born, they will perform testing (most likely a MRI and/or CAT scan) necessary to give them more information.

The following is taken from the National Institute of Neurological Disorders and Stroke website: http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm

What is Dandy-Walker Syndrome?

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the area of the brain between the two cerebellar hemispheres (cerebellar vermis), and cyst formation near the lowest part of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability and vomiting, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and malformations of the heart, face, limbs, fingers and toes.

More Links:

Here are a few more links about DWS:

http://dandywalker.org/dandy-walker-syndrome/

http://www.dandy-walker.org/

What’s Next?

On October 31st, we have a growth ultrasound (normal every 4 weeks at this point) and an appointment with the Pediatric Neurologist.  We are anxious to meet with the Pediatric Neurologist to learn more about DWS and what we might expect when our little miracle arrives!   Until then we will do our best to be patient and accept that everything happens for a reason.  My BFF, Amy (aka Auntie Amy) said it best, “Everything surrounding this pregnancy has made us all look at God and His plan.  Modern medicine is awesome but God is the ultimate one in control.”

Please keep our little miracle in your prayers!

With Love,

Steve and Michele