Parent Blog: Teri Gorsh
In their words
North English, Iowa
In February of 2014, our son, Ean, had starting mysteriously waking up with vomit in his bed. It wasn't until he fell asleep watching TV one evening that we discovered what was really going on.
He suddenly started vomiting while he was sleeping, but after a closer look, he appeared to not be breathing and was unresponsive. 9-1-1 was called, and after several minutes, he started to respond. By the time the paramedics got there, he was sitting up and starting to recover from this episode.
We were taken by ambulance to UI Stead Family Children’s Hospital. Once there, he was put through all the testing and an MRI. Everything looked normal, so we were discharged and an appointment was set up with neurology.
Over the next several nights, the episodes continued. After some time passed, Ean was sent for an EEG (a test to measure electrical activity in the brain), and it came back very abnormal. Ean was started on anti-seizure medications. After continued care by neurology and many failed medications, Ean's seizures continued.
After about a year, we began to explore the option of surgery to help stop his seizures. After completing several tests at UI Stead Family Children’s Hospital and traveling to Minneapolis for a MEG scan, it was still unclear if surgery would be a success. So, we met with a neurosurgeon. We were told the best option was to do an intracranial EEG, which in itself is a major brain surgery. After much thought, we agreed and March 24, 2016, Ean had his first brain surgery.
After about 15 hours, we finally saw our son—with his head completely wrapped and many wires coming from the bandages hooked to the EEG machines. He was set to have the next surgery to remove the EEG and hopefully the area causing the seizure on March 31. Unfortunately, things didn't go as planned, and surgery was postponed until April 5 in hopes of capturing more seizures and pinpointing the area causing the seizures. The decision was made to disconnect a large portion of the right side of Ean’s brain, but not enough to cause any loss of motor function. The hope was seizure freedom, so we agreed.
Everything went as planned, and Ean recovered after almost a month at UI Stead Family Children’s Hospital. We went home, and things were looking hopeful. The doctors had done some pathology testing on his brain matter, and the results showed that the whole right side of his brain had cortical dysplasia.
The risk was there that seizures could come back some day. Unfortunately, only 17 days passed and the seizures came back. Now he was having daytime seizures, and they were causing him to fall unexpectedly and cause harm.
After trying new medication with no relief, we were back at UI Stead Family Children’s Hospital with Ean’s team discussing another major surgery. This time, the motor section of his brain was at risk. His neurosurgeon told us that Ean would need a hemispherotomy, which is the removal or disconnection of half of the brain—in Ean’s case, the right side. They assured us this would stop his seizures, and even with the loss of motor skills on the left side, this surgery would improve his quality of life.
On Jan. 11, 2017, Ean had a hemispherotomy. After recovering in the hospital, Ean spent a few weeks at inpatient rehab. He is now seizure-free and thriving. He has learned to walk again, and he is progressing every day. He has had a few setbacks and a couple hospital stays, but it has all been worth it. Ean is living his life without seizures.
Our experience saved our son's life. It has been a roller coaster, but as of now, I completely believe in and trust these doctors. They have gone above and beyond to help Ean.