Ethan S. - Quilt Finished in 2006
Born: June 25, 2002
Illness: Dandy Walker Malformation, Autism, Gerd
Ethan S.'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 and 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 had gotten told that he was just colicky come to find out he had very severe reflux he had it so bad he was refluxing sixty times in an hour meaning one minute every hour he was burning his esophagus (July 2002).
As Ethan grew he wasn't doing the milestones that he should have been so off to the doctor's 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 temperment.
This is when we found the reason for everything. He has Dandy Walker Malformation which is a congenital birth defect that can cause Hydrocephalus. It is where the cerebellum is smaller resulting in more brain fluid and causes low muscle tone and a bunch of medical problems. There is no cure and being that it is a birth defect it should not have taken 2 years to figure out this was the reason for everything from the beginning.
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. 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 Autism in addition to his Dandy Walker Malformation. This seems to complicate his problems even more, we can only hope that this is the end to his medical problems for a while, but whatever comes to us we will cross that bridge when we get to it.
Ethan continues to thrive as a toddler and doesn't seem to let his limitations stop him from what he wants to do. He is a very smart and 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 noise and has lights on it, thank you to Duracell batteries that keep going and going like Ethan.
Ethan is a very special little boy and we hope that he can maintain a close to normal life as any other child his age and as he grows. We hope that he can acheive 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.
Written by Ethan's mom Michelle on July 13, 2005
