When Evan Stauff was born, he was as perfect as any baby boy could be, according to his parents.
The Stauff family are natives of Payette, but currently reside in the Portland area in Oregon. They have numerous family members in Payette and Payette County.
His father, David Stauff, created a Web site for the public to view. Two months after Evan Stauff was born, he was diagnosed with infantile epilepsy.
“We have had quite the year, during his first year of life,” David Stauff said. “We want to get the word out and help bring awareness to infantile epilepsy.”
Stauff was born a healthy 7 pounds, 11 ounces, on Jan. 11, 2010. The first two months of his life were typical, as he began to develop quickly and acted as a normal infant should. On April 1, 2010 however, Evan and his family’s world changed forever.
At about 5:30 a.m., Evan Stauff’s parents woke up to him having grand mal seizures. He was rushed to the local medical office to see his pediatrician immediately. From there he was sent by air ambulance to Oregon Health Sciences University’s Doernbecher Children’s Hospital in Portland. As physicians in Portland waited for Evan Stauff’s arrival, no immediate trauma was identified through the initial CT scan. The source of the siezure activity was unknown.
After undergoing extensive evaluation, the news of Stauff’s condition came as a shock to his family. They learned that in addition to having grand mal seizures, Stauff was also experiencing a debilitating seizure type called infantile spasms that come in the form of “clusters.” Medications for Stauff’s condition were administered immediately. As time went on however, each treatment, or antiepileptic drug, proved unsuccessful and his development began to plateau significantly, then regressed. Several trials were made with each medication, and just when everyone thought they were working, Evan Stauff’s clusters of spasms continued, more often than before.
“He was to the point of experiencing nearly 100 seizures, a day,” David Stauff said.
During the medication trials, Evan Stauff received several tests, as well as multiples lumbar punctures to test for anything biochemical related. It was determined that the back left portion of Evan Stauff’s brain was abnormal, but no immediate identifiable markers were found.
After exhausting seven different medications plus three ratios of the Ketogenic Diet, Stauff’s epilepsy status was considered intractable. This means that medical management for the seizures had not stopped them. At this point nothing was working and his development was slipping further and further away. His case was referred from OHSU to UCLA Ronald Reagan Medical Center’s Pediatric Neurology Department in Los Angeles, to undergo further evaluation and pre-surgical screenings with Pediatric Neurosurgery at UCLA.
Many of the same tests that were performed at OHSU were again completed at UCLA. Given the experience and expertise of the medical staff with this type of case however, Evan Stauff was considered a good candidate for surgery. The localization of seizure activity on the left side of Evan’s brain was the determination for a procedure to take place. The discovery of hypsarrhythmia during an electroencephalogram, which measures the electrical activity in the brain, by UCLA doctors prompted them to act quickly. The surgical procedure the baby had is called hemispherectomy. This is the removal or disconnection of one of the hemispheres of the brain. This surgery has given a new hope for him to become seizure free, David Stauff said. It saved his life.
“This surgery was our only way to give him the best opportunity at a full life,” Stauff said. “He will now have a better quality of life. My older two boys said they feel like their brother is now a baby. Now they feel like they have a brother.”
The surgery was successfully completed at UCLA Nov. 23. Further evaluation while he was in the operating room revealed that his left hemisphere was much more under-developed than initially thought, or what any type of imaging tests could see. This side of his brain never fully developed in utero, and as a result an anatomical hemispherectomy was performed on the left side; the removal of the entire left hemisphere.
“The remaining half of his brain will take over and train so it will essentially function as his entire brain,” David Stauff said. “It happened at such a young age that he should develop in a somewhat normal way and have a pretty normal life.”
This surgery needed to happen, Stauff said, as this was the only way to receive resolution. The surgical procedure posed a significant challenge for the medical team, but after nearly 11 hours the family got the news that everything went well.
Evan Stauff will continue to undergo extensive rehabilitation at this point.
“We never had to think twice on this surgery, we knew the second we heard about it that it needed to be done,” Stauff said. “It is going to give him a better chance at a better life. Right now, it’s amazing at how the smallest things are the biggest accomplishments to him. Overall, we’re happy with Evan and his development.”