Things are going great. Everyday I watch him and I think how much of a miracle he is. I love him more than life itself. Tre is playing with his toys and acting like a very normal 4 month little boy. We will have an MRI in September and I keep having this dream that they tell me everyone made a big mistake. I mean really there seems to be nothing wrong right now and yes we are so blessed, but at the same time it is so scary because you wonder if the bad will ever really hit....

He is now 4 months old!

Tre is now 4 months old. We just saw the neurologist again and he just had his 4 month visit at the Pediatricians office. he weighs 20lbs and is 26 1/2 in long. I can't believe it. They say he is right in line with "normal" 4 month old babies. We will have an MRI in Sept. when he is 6 months old, but for now we pray and thank god everyday that our little boy is doing well!

Tre's Story

It all began when I was only 18weeks pregnant. My AFB test that they do at 15weeks came back abnormal for a possible Neural tube defect. We were sent for a special HD ultrasound and while the Doctor was checking my babies spine he noticed that there was a cyst on my sons brain that was due to dandy walker. At the time they did an amnio to make sure that there were not other abnormalities. During this two week wait we were so overwhelmed. We have a 2 year old daughter that is fine so we had no idea why this was happening. We dealt with trying to make a decision about whether to keep our son our not. The prognosis for a dandy walker baby is so wide in variety that we had no idea what to expect and what made it worse is the doctors had no idea other. They couldn't answer any questions and were no help. All they could keep saying was we would see when he was born. This was the worst feeling ever. I couldn't understand why they couldn't answer any questions and why no one seemed to want to help. Then he was born on the morning of 03/18/09 at 730am. This was the best day of my life. At birth they did a CT scan, renal ultrasound, and c-spine x ray. All came back normal however it did indicate the baby had a full dandy-walker malformation. Tre is 3months old right now will be turning 4months on 07/18/09 and we will be having a MRI in September when he is 6 months. So far he has had 2 appointments with the neurologist and 3 appointments with the pediatricians. He has no problems right now. We also are involved with the Early Intervention Team in Charlotte. This is a great program. They come to the home once a month and they monitor his development. If he ever needs any type of therapy they will help arrange that also they help arrange applying for other benefits like child care, and medical. I would strongly urge anyone to contact them when you find out to get the ball rolling as a lot of these paper programs require a long process.

Attached is a beautiful picture of my son at 3 months.

What is Dandy - Walker Malformation

Like everyone else the explination is the same medically.
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 internal base 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, vomiting, and convulsions, 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......
Not much help right.

Why am I Blogging?

In all honesty I truly felt that when I found out that my son was going to be born with dandy walker that when I went home to look for things on the Internet all I could find was negative information. I was scared and had no idea what to expect. No one could answer my questions and all I could do was read horrible things that may occur to my unborn son. So I want to be a voice of hope. A helping hand to those that may just want to vent or ask questions. So i am going to start a Dandy Walker Blog for those that feel the same way I did. I plan on showing pictures of my son and his developments and hopefully create a place where we can feel comfortable and gain knowledge together. Below I have created a specific google search engine for only Dandy - Walker please feel free to use it and we can talk about whatever information you may find! This first picture is of my son the Day he was born. Mind you the prognosis was not good so we did not know what to expect. The doctors told us he may not be alive, or eat, or cry, or breathe on his own. But this beautiful Baby Boy Verdel Ratliff III was born on 03/18/09 @ 730am and was screaming as loud as you could imagine and ate just fine!