Ringing The Bell
16″ x 20″ Watercolor on Paper
Part of the “See What I Can Do!” series of paintings
Several months before her birth, an ultrasound showed a sack of fluid building up behind Bella’s head. But more concerning, part of her brain, half of her cerebellum, had not formed. Was it possibly Dandy-Walker Syndrome? There were so many possible challenges that Bella could have. She might have slow or delayed physical development, breathing problems, poor muscle coordination, balance issues. She might have problems with headaches, breathing, and with the nerves that control her features of her face. It was possible that she would never be able to walk.
Within two weeks of Bella’s birth, she had surgery to remove the sack and the fluid behind her head, and then have a shunt inserted to relieve the build up of fluids and pressure on her brain. In most ways, Bella appeared to be a typical child. She grew and developed. She learned to walk. She learned to talk and she pushed herself to do as much as she could. She had friends who were taking gymnastics classes. She pushed herself to do things that might be beyond her abilities.
In gymnastics, the balance beam was a problem. Walking on the low beam was easier, because if she lost her balance, it was just like stepping down. When on the high beam, she was much more comfortable holding the hand of her coach. Even then, there were times she would have to jump down to the ground and then climb back up again.
At the gym there is a rope anchored to the ceiling, and on occasion, the classes would take turns climbing to the top of the rope and ringing the bell that is mounted on the ceiling next to the rope. Like all young children, Bella wanted to test herself, to see what she could do. It took several attempts on different days, but one day she finally climbed the rope and rang that bell.
Bella has done well in school (although mathematics seems to be a challenge for her. But that seems to be typical for many other children), although she does have a special plan to assist her with learning. She loves to read, and create works of art. She loves the outdoors and enjoys camping with her parents and her sisters. And, she loves to annoy her sisters, but for the most part, they get along.
It seems that she is one of the fortunate children with Dandy-Walker Syndrome. It has not impacted her life as significantly as others.
Dandy Walker Syndrome
Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle, a partial or complete absence of the area of the brain between the two cerebellar hemispheres, and cyst formation near the lowest part of the skull. An increase in the size and pressure of the fluid spaces surrounding the brain (hydrocephalus) 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, abnormal breathing problems, and problems with the nerves that control the eyes, face and neck. Dandy-Walker Syndrome is sometimes 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 and malformations of the heart, face, limbs, fingers and toes.