What We Found Out in Michigan

Travis, Ethan and I, traveled to Michigan this week to meet with Dr. Chugani at the Children's Hospital of Michigan. We were participating in a study for children with Sturge Weber Syndrome. As part of the study Ethan underwent many tests including an MRI, Neuro-psych evaluation, EEG and PET scan. All of these tests serve to determine current brain function/damage.

When all the tests were complete, we met with Dr. Chugani (he is a pediatric neurologist and the foremost authority on Ethan's condition) He explained to us that the back and lower region of the left half of Ethan's brain are no longer functioning and should be removed. He also feels that brain surgery would surely enhance Ethan's current and future quality of life. This surgery known as a "lobecotmy" or "partial hemispherectomy" is very specialized particularly in children. Only 3 hospitals in the nation perform this surgery pediatrically. The children's hospital in Michigan performs the most on patients with Sturge Weber Syndrome. So, this is where we have decided to have Ethan's surgery.

If all goes as anticipated the Doctor told us we could expect Ethan to have a seizure-free life. Which would be AMAZING because at present Ethan has 8-10 seizures a month. It would also mean that Ethan could be weened off all the awful medications he has been taking for over a year.

We are very excited about the prospects of this surgery; well, as excited as one can be about cutting out a portion of your baby's brain. Travis has always felt that surgery could be the answer for Ethan. But, the idea always terrified me.

In the past two months I have been doing a ton of research on the procedure, doctors, and families who have already had the surgery. I stayed up for hours each night reading everything I could on the subject. I heard many encouraging stories, along with some horror stories. I knew that Ethan's window for this surgery was closing. The best results are achieved if it is done before the age of 2. It is done in older children and even adults but with less favorable results. The reason it is important to do early surgical intervention is because it gives the remaining portion of the brain the best chance to reorganize and assume the functions of the missing portion. Also because the nature of the disease is degenerative. If you don't stop the seizures and remove the dead portion, you run the risk of mental and physical decline.

Dr. Chugani thought that after surgery there was an excellent chance that Ethan could have a normal life with normal intelligence. I know this sounds incredible. How can someone be just fine when you remove a chunk of their brain? Apparently a child's brain is incredibly malleable and capable of compensating for a surgery like this.

I feel sure that my Heavenly Father has had a hand in this whole process. We have been so blessed in our lives. We have relied on our testimony that God knows what he is doing and he loves us with a perfect love. Our love for each other has made it possible to get through every difficult situation that we have had to face. I trust Heavenly Father, and apparently he trusts me to make the right decision for sweet Ethan.

We have also relied on the love, help and support of our families we are so fortunate to have all of you in our lives. I love you!