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.
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:
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
