Thank you for visiting our blog. This is our story on becoming parents, raising one child with complex medical needs, and one without them. It is from our perspective, the way we live and breath it in the moment. I expect some will learn from this, some will disagree or maybe not relate to it. But our hope is that other parents will find this that have just received a diagnosis for their child as strange as Dandy Walker Malformation, and get some real time perspective from parent’s who are living it. We felt so lost without knowledge, and had a very difficult time making the right choice for us. We hope some of the special moments, successes, failures and hopes we write about will make a difference for others who find themselves in the same situation.
This is also a place for us to write our thoughts, and keep track of our day to day, and really express freely what this has all been like for us. We constantly need help and support, and we feel sharing our world, will help others understand how much we appreciate every little thing people do and have done for us, so we can get Ethan the best care out there, and also maintain a healthy and happy home.
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.
What is the prognosis?
The effect of Dandy-Walker Syndrome on intellectual development is variable, with some children having normal cognition and others never achieving normal intellectual development even when the excess fluid buildup is treated early and correctly. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.
What is Tetralogy of Fallot.
Below is a definition:
Tetralogy (teh-TRAL-o-je) of Fallot (fah-LO) is a congenital heart defect. This is a problem with the heart’s structure that’s present at birth. Congenital heart defects change the normal flow of blood through the heart.
Tetralogy of Fallot is a rare, complex heart defect. It occurs in about 5 out of every 10,000 babies. The defect affects boys and girls equally.
Ethan has the below two defects:
Ventricular Septal Defect
The heart has an inner wall that separates the two chambers on its left side from the two chambers on its right side. This wall is called a septum. The septum prevents blood from mixing between the two sides of the heart. A VSD is a hole in the septum between the heart’s two lower chambers, the ventricles. The hole allows oxygen-rich blood from the left ventricle to mix with oxygen-poor blood from the right ventricle.
Pulmonary Stenosis
This defect involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery. Normally, oxygen-poor blood from the right ventricle flows through the pulmonary valve and into the pulmonary artery. From there, the blood travels to the lungs to pick up oxygen.In pulmonary stenosis, the pulmonary valve cannot fully open. Thus, the heart has to work harder to pump blood through the valve. As a result, not enough blood reaches the lungs. This basically means Ethan also has a hole in his heart, as well as a narrowed pulmonary valve.
Dandy Walker and Us 