The Story of Jacob: Neurosurgery

Left Functional Hemispherectomy

Children's Hospital Boston

December 22, 2010

I am horrified when I look at these pictures two weeks after surgery. We "elected" to do this to Jacob - to do this for Jacob. And when you think you can't possibly make it through this, you can, you do, because you have no other choice. You have already made the choice. We chose the possibility of a life without seizures and medication for Jacob and he is well on his way.

Jacob on "happy juice" before surgery.

lCU after surgery.

Breathing tube.

Head drain.

After two days in the ICU, Jacob opens his eyes.

On the fourth day in the ICU, the breathing tube is removed.

Jacob is moved to the 9th floor.

The head drain is removed.

The dressing is removed.

The incision is shaped like a horseshoe.

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His Story

Jacob was diagnosed with Infantile Spasms on May 7, 2009, two days after we observed his first jacknife seizure. He was admitted to Hasbro Children's Hospital that afternoon to begin a course of treatment with ACTH. The next day, an MRI revealed the cause of the Infantile Spasms - a stroke in utero. Two-thirds of the left hemisphere of Jacob's brain was replaced by cerebrospinal fluid. We were discharged after four days and continued the ACTH treatment. After four weeks, the Infantile Spasms and hypsarrhythmia on his EEG were resolved but another seizure type emerged, complex partial epilepsy and myoclonic seizures.

Jacob was also diagnosed with right hemiparesis, a slight paralysis of the right side of his body. He made great strides walking independently but had limited functional use of his right hand. In February 2010, Jacob participated in the Constraint Therapy Program through Hasbro Children's Rehabilitation Center and participated again in August. The program involved intensive therapy with his right arm and hand. Jacob also received physical and occupational therapy and speech therapy through his Early Intervention Provider.

On December 22, 2010, Jacob underwent a left functional hemispherectomy, disconnecting the left hemisphere of his brain from the right hemisphere. Our hope was that he would be seizure-free and off of his anti-seizure medication.

Jacob did not have another seizure following his surgery and within nine months, he was weaned off of his anti-seizure medication.

Although early detection, aggressive treatment, intensive therapy, and self-advocacy have been essential to Jacob's rehabilitation, Jacob is blessed. He is an amazing surprise.

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Neurosurgery