Make A Child Smile

Ethan's Story
written by mom Michelle

Ethan was born on June 25th, 2002 and this is when his problems started. We knew the minute that he was born with low apgars and possible sepsis, that something was terribly wrong. He spent his first days of life in the Neonatal intensive care unit. They ruled out the sepsis and said that his troubles were due to meconium staining and jaundice. He came home after 5 days. Our days and nights were filled with caring for our little boy, but we knew something wasn't right as he cried constantly and was always fussy. Being a new mom, I was told that he was just colicky but came to find out that he had severe reflux. He had it so bad that he was refluxing sixty times in an hour, meaning he was burning his esophagus every minute. This was in July 2002. Thank you to the doctors in Crouse, he is still being treated for acid reflux.

As Ethan grew, he wasn't doing the milestones that he should have been, so off to the doctors we went. We have been through three pediatricians to date and finally went back to our family doctor which has been a blessing. We decided that Ethan should have an MRI (September 2003) to rule out what could be causing his constant drooling, tripping over things and his temperament, This is when we found the reason for everything. He has Dandy Walker Malformation which is a congenital brain malformation that basically means that he has a cyst on his cerebellum. His cerebellum is smaller and this interferes with the body's ability to drain the cerebrospinal fluid from the brain which results in Hydrocephalus. Although there is no cure for this disease, at least we have an answer for what is going on with our little munchkin.

The story doesn't end there, we were still concerned because he was having awful temper tantrums and problems with him sleeping and calming down, especially in extreme weather because the barometric pressure causes headaches, so when it storms he is miserable! We thought that this was due to extra fluid in his brain so we went to yet another doctor (pediatric neuro, July 2005) and he was diagnosed with mild Autism in addition to his Dandy Walker Malformation which seems to complicate his problems even more.

Ethan went for another pediatric neuro appointment in October, 2005 for another MRI because we were fearing that the fluid in his brain was increasing as he has been having awful headaches. He has also been tripping over his feet a lot, but the doctors said that there wasn't anymore fluid and that we would continue to monitor his progress. We also found a developmental pediatrician in January 2007, that we are hoping will be able to help us further with Ethan's conditions. As of right now we take one day at a time and we hope for the best for him as there is no cure or treatment that will make this go away. Since March 2007, we have been waiting for insurance company approval to go to Chicago and obtain a second opinion on Ethan's condition, as we are not getting the answers that we are seeking in our hometown. We have spoken to Dr. Dobyns and we are waiting for him to sign the paperwork to appeal our insurance so that we can go to them. We have been accepted into the Dandy Walker study at the University of Chicago and currently they are trying to figure out what causes this malformation, and there has been findings that autism seems to go hand in hand with the Dandy Walker. We are very excited to be able to be a part of this awesome study.

Ethan has recently learned how to pedal his trike and that is a big progress for him. Ethan is a very special little boy, he has mastered the ability to be able to dress himself and we are still working on potty training. He is now able to feed himself, he knows his colors, his ABC's and is learning to count to 30 (he can also count to 10 in Spanish). He is a determined little boy who does not like the word "No" and seems to want to know how everything works and is infatuated with anything that makes noises and has lights. We hope that he can maintain a close to normal life as any other child his age. As he grows, we hope that he can achieve the same goals as any other person. We will be there for him regardless of what his dreams are and can only hope that medical science will find a cause to Dandy Walker Malformation and find a cure.