Surgeons remove quarter of baby's brain to stop seizures
Parents say their son's recovery continues to amaze them
When Emory Daniel was born, it didn't take long for his pediatrician mom to realize something wasn't quite right.
"He was doing a little bit of jerking, and it crossed my mind it was a seizure, but babies do that a lot anyways," said Cara Daniel.
But the jerking kept happening, and Cara and Aaron Daniel quickly realized their son was suffering seizures.
Emory's dad is also a doctor, so this South Lyon couple approached the problem not only as parents, but also as physicians determined to find the best answer for their baby.
Tests revealed Emory was suffering from a problem called cortical dysplasia. It occurs when part of the brain doesn't develop properly in the womb, causing brain signals that short circuit, triggering a seizure.
"We knew right away that he would need surgery, because all of the doctors told us that," said Aaron Daniel.
Cara and Aaron did their research and chose neurosurgeon Dr. William Bingaman at Cleveland Clinic's Epilepsy Center.
"If your brain is seizing, it's not developing, so when babies seize we worry that they're not going to be normally developmentally or cognitively, so we really are trying to stop the seizures," said Bingaman.
Doctors initially wanted to wait until Emory was six months old to do the surgery.
"You couldn't do it too early," said Aaron Daniel. "They told us the brain was too squishy and too soft to do it well."
But at five and a half months, Emory had stopped smiling, still couldn't recognize his parents, and his seizures were getting worse, occurring up to 16 times a day.
"He was crying with each seizure, and he was in a lot of pain with each seizure, so that was pretty scary and pretty heartbreaking," said Aaron Daniel.
To stop the seizures, surgeons needed to remove the affected part of Emory's brain.
"If there's an abnormality in the brain, very often, if we can remove it safely, then we can stop the seizures," said Bingaman. "At that point, we're discussing with his parents, 'Hey we want to remove three out of the four lobes of your child's one side of his brain.'"
As unimaginable as it sounds, the Daniels said they knew there was no other choice.
"The fact that the seizures had gotten so much more difficult shortly before made us look forward to surgery," said Cara Daniel.
They hoped the surgery would ultimately give Emory more than it took.
"That was my biggest fear, that he wouldn't even recognize us and love us, and of course, I guess that kind of goes along with living a worthwhile life," said Cara Daniel.
In February of 2011, Bingaman and his team removed a quarter of Emory's brain. About four weeks after the surgery, the seizures stopped, and as doctors had hoped, the remaining parts of Emory's brain began to reorganize to compensate for the portion that was removed.
"By removing that area of the brain which normally does language function, his language will develop on the other side of his brain," said Bingaman.
"He really progressed rapidly," said Aaron Daniel. "He went from just laying there, not smiling, not doing anything, to this happy, running-around kid that you see now."
Now two and a half years old, Emory enjoys playing with his brothers, piggyback rides, ceiling fans and singing songs.
Because of the surgery, Emory did lose his peripheral vision on one side. The ability of a child's brain to reorganize is called plasticity. Bingaman said that ability typically ends around age 13 or 14.
"We are really lucky that it happened when he was that young," said Cara Daniel. "If that was to happened to an adult, they would be so severely affected."
The Daniels said only time will tell if Emory will suffer any long-term deficits. He still needs speech and physical therapy, but he continues to amaze his parents.
"He does new things every day. I think a lot is still unknown about him," said Aaron Daniel. "Some kids do really poorly and some kids do really really well, and at this point, there is no reason not to think he won't do very well."
"He is a blessing for his older brother, for us, and for his younger brother, in teaching us great things," said Cara Daniel. "We just celebrate everything that he does achieve."
To learn more about Dr. Bingaman, click here.