Willow was born Dec. 24th, 2010; only 10 days before her due date. Everything went perfectly, there were no issues at birth. By the time we went to her 2 month check-up, we noticed some things were different with Willow than our other children (she is our 4th). She would tilt her head in the car seat in such a way that just did not look normal, she also had between birth and 1 month a few nights where her breathing would stop for a few seconds and then come back again, as well as some weird twitches that have yet to be said were anything more than normal baby twitches. But at her 2 month check-up, her pediatrician decided to schedule a head ultrasound just to make sure nothing was wrong. That was when we found out she has hydrocephalus. An MRI was immediately scheduled for March 14th. It was the next day that we would find out the severity of it all.
Willow has hydrocephalus ex vacuo, meaning she has hydrocephalus due to other reasons. She has extensive diffuse white matter loss throughout both cerebral hemispheres with thinning of the corpus callosum and moderate to severe ventriculomegaly. She has an enlargement of the lateral and 3rd ventricles and mild enlargement of the 4th ventricle. It was never noticed in utero, or at birth so we are not sure what caused her to have this and we may never know. We are still in the beginning steps of this journey as we still have not seen the neurologist and won’t until August, but until then we have a very happy daughter that has brought us so much joy to our family.