will I ever be able to read stories like this without bawling?

A Medical Miracle: toddler doing fine after surgeons remove epileptic part of his brain

Melissa Fairchild can recall every detail when her eight-month-old son, Cody, began having up to 300 seizures a day back in the fall of 2004.

“We were in the car approaching the parking lot where my husband works when Cody began to scream. So I swerved into a spot, pulled him out of his car seat and positioned him against the steering wheel to see if I could calm him down. That’s when his eyes rolled back, his head fell forward and his arms flew up in the air. I just freaked,” she said.

Eventually, Cody was diagnosed with a malignant form of epilepsy – infantile spasms characterized by seizures called “drop attacks.” On some days he experienced 60 to 70 of them in clusters.

Over the next several months, different medications were tried – and failed -- to control Cody’s seizures. So his neurologist in Toledo referred Cody to Harry Chugani, M.D., chief of pediatric neurology and director of the PET Center at Children’s Hospital of Michigan. Dr. Chugani is known for developing the PET (position emission tomography) approach to locating “seizure focus” in patients who have difficult epilepsies.

After injecting the brain with glucose nuclear dye, PET’s cutting-edge technology reveals “slices” of the organ (in this case brain) and indicates areas of functional abnormality on a screen. Children’s Hospital of Michigan is the first hospital in the world to have a PET center fully dedicated to kids.

Whereas Cody’s MRI scans were negative, his PET scans indicated abnormalities in the posterior of the left hemisphere of the brain.

After collaborating with a team of neurologists and surgeons, Dr. Chugani concluded that the abnormal portions of Cody’s brain – about 60 percent of the left side – would have to be removed in order to control his seizures.

“Actually, Cody caught a break because of his age and because the abnormal areas were confined to the left side sparing the motor cortex,” said Dr. Chugani. “Had both sides of the brain been affected, we could not have done much for him.”

“In Cody’s case, we took out areas that affect language, and yet Cody seems to be developing speech. You see, the brain is quite remarkable in its plasticity. During the first five years as it grows, the brain is able to reorganize itself quite well. So for Cody, the language function has transferred to the other side.”

“In fact, the young brain is able to transfer many functions to the other side after operations of this type,” said Dr Chugani. “There are two major exceptions, however. If you take out the motor strip of the motor cortex, then one gets weakness on the opposite side of the body. It never fully recovers. The visual area is the other exception. If you take out the visual cortex on one side, then there will be a large blind spot on the other side.”

The neurosurgeon, who performed Cody’s surgery, or multi-lobar resection, was Sandeep Sood, M.D., assistant professor of neurological surgery at Wayne State University.

“Cody had a two-stage surgery,” said Dr. Sood. “In the first stage, we positioned about 120 platinum electrodes on the surface of the entire left side of his brain. After closing his skull, his brain activity was monitored by Eishi Asano, M.D., Ph.D., assistant professor of Pediatrics and Neurology, in a special room with a camera. So we were able to figure out precisely what parts of his brain were causing his seizures.

“Four days later, during the second stage of Cody’s surgery, we removed most of his frontal lobe, a fair amount of his parietal lobe and almost the complete temporal lobe on the left side during a nine-hour procedure,” said Dr. Sood. Today, Cody appears to be as normal as any other two-year-old. He loves to run and jump and play with his three-year-old brother, Caleb.

“Cody is quite responsive, too,” said his father, Chad. “If I tell him to go to bed, he goes right to bed. And he can say a couple of words, although we have him in speech therapy right now. He attends an early intervention class and is learning sign language, just in case.”

Dr. Sood concurs that Cody is doing amazingly well. “When I first met him he would come into my office and seize for 15 minutes,” said Dr. Sood. “It is most gratifying to see him come in today and be seizure free.”

Dr. Chugani says that Cody’s prognosis is excellent, although he is at risk for learning problems. However, he should be able to grow up normally and live like anyone else.

Meanwhile, Cody’s parents are thankful to everyone at Children’s Hospital of Michigan who helped them and their son get through such a harrowing experience.

“Everyone at Children’s Hospital was fantastic,” said Melissa. “I love them to death. They’re like a second family to us now.

“Take Dr. Chugani, for example. When we went for the PET scan we weren’t scheduled to see him. But when I requested to meet him, he dropped everything, came down and thoroughly explained how the technology works.

“Then there was this young man, a nurse, who would just stay and chat when one of us was sleeping and the other needed an adult to talk to. And, every time we went into the EEG lab for Cody to have a test done, Carol and the other technicians would always be sure to say ‘hi’ and give Cody a hug. I could go on and on,” she said.

“And don’t forget the volunteer who came in with hundreds of Beanie Babies glued to his body,” said Melissa. “He was quite the character, and he gave Cody a volunteer-made blanket. We loved that man.”

“Basically, Cody was able to take his first steps in life twice,” said Melissa, “and we owe it all to Children’s Hospital of Michigan.”

If you're considering surgical intervention for your child's seizures you can read in more detail about Trevy's Hope Team and the interventions they offer here. And a heartfelt thank-you to Cody's family for sharing their story with the world!


blogzilly said...

In Cody’s case, we took out areas that affect language, and yet Cody seems to be developing speech. You see, the brain is quite remarkable in its plasticity. During the first five years as it grows, the brain is able to reorganize itself quite well. So for Cody, the language function has transferred to the other side.

Man...I hope that happens for B soon...my concern is that this 'unidentified' shit on his right side is not gonna allow it.

Anonymous said...

i will not sob uncontraollably....

kt x

Anonymous said...

i will not sob uncontraollably....

kt x

Megan said...

Reason to not lose hope for Trevy and all his surgery buddies. How could you not bawl? It's a wonderful thing!! BTW, Dr. Chugani is such a rockstar.

Megan said...

one more thing, "malignant form of epilepsy", I'm totally gonna use that phrase from now on. Seems to connote just how serious IS is to those who are unfamiliar with it.

baby trevor's mommy said...

I loved that "malignant form of epilepsy" too! It packs some power...


Alicia said...

Who is this family!? We are in Toledo too, and were NOT referred to Chugani's team. We found him on our own. It sounds like Remy and Cody are around the same age... and have about the same amount of brain tissue!!!!! I would love to connect to a local post-op family.

Anonymous said...

Oh, go ahead and bawl. Sending virtual tissues.

Did you reference where you copied this story from? (I missed it, will look back.) Despite my constant disdain for media representations of real life, I learned something from this story, too. Helps me to know what you are reading and to read quotes from Dr. C.

baby trevor's mommy said...

Leesh...here too. Parents with a child having a similar diagnosis can see two different neuros IN THE SAME OFFICE...and have two entirely different outcomes. Thank God we have our Dr. Neuro. I think she may be the only one in our local practice who would support our quest for surgery in Detroit. And even she needed some prodding. Maybe you could email Dr. C and ask if he can connect you with Cody's family?

Barbara...any media interview I've done and then read their interpratation has always left me dissatisfied. That said...I think they did a pretty good job sharing this family's story. Of course mom & dad my have critiques. :) Dr. C is an amazing guy. With an extraordinary passion to help children like Trevy.


Lisa said...

As I was reading this I was mentally hearing Dr. Chugani and Dr. Sood saying their parts. Hah! So wonderful...that's our story for the most part, right there.