The Gulf Between Grief & The Regular World

Posted on Posted in Articles, Dandy Walker Syndrome, Induction/L&D

By Kate C. It has been two years since my husband and I left our home, eldest daughter, and entire support network behind on a last-minute flight to the Rocky Mountains. There, there was a doctor who would help us let our baby girl go. With a single injection, he released her spirit from its broken body, then, over the course of several days, safely, carefully, he released her body from mine, so that I didn’t have to follow my baby into the abyss. I birthed her, still and whole, exactly one week after an MRI shattered our world. People sometimes ask me what that was […]

Finding Out: Dandy-Walker Syndrome

Posted on Posted in Agenesis of the Corpus Callosum, Other Diagnoses, Stories, Termination after 24 weeks

By Kate C. Originally titled “Dandy Walker Syndrome” and published at Makin’ Babies – Adventures in Family Building. Republished by permission. I went for a reassurance ultrasound yesterday. It was not reassuring. At my fetal survey, much earlier in my pregnancy, they had a very hard time imaging the baby’s brain, and there was a ghost of a brain abnormality on the resulting images. It showed up in some, not in others. I was sent to a bigger, higher-risk hospital for a second opinion where they also had trouble getting their images but saw no sign of any abnormalities and declared my baby healthy and […]

The Clearest Choice

Posted on Posted in Agenesis of the Corpus Callosum, Induction/L&D, Opinion, Termination after 24 weeks

By Kate C. Originally titled “My Story” and published at Makin’ Babies – Adventures in Family Building. Republished by permission. Every time I sit down to write this story, I am immediately overwhelmed. Again and again I stand right back up and walk away. I like to think of my grieving self as a whole room full of women.  Some I like more than others, but they’re all parts of me.  One is sweet and compassionate and wants to reach out to help others who have been through my hell.  Another is a fiery activist with a sharp tongue and a self-righteous sense of justice. […]

What is Dandy-Walker Syndrome?

Posted on Posted in Diagnosis Information

Dandy-Walker Syndrome is a rare congenital malformation that involves the cerebellum and fourth ventricle. The cerebellum is the portion of the brain controlling balance, posture and the voluntary movement of muscles. While many additional problems may be present, Dandy Walker is recognized by three main features: the agenesis (non-development) or hypoplasia (under-development) of the cerebellar vermis; cystic dilation of the fourth ventricle; and enlargement of the posterior fossa. Medscape.com lists 41 other serious medical conditions commonly associated with a diagnosis of Dandy-Walker Syndrome. These include Hydrocephalus (in 70% -90% of patients, usually developing after birth), Agenesis of the Corpus Callosum (20%-25% of patients), numerous other […]