Cohen was diagnosed with congenital hydrocephalus associated with aqueductal stenosis at 23 weeks gestation with little to no hope at leading an independent life. He was born on June 2, 2014 at the University of Chicago via planned cesarean at 36 weeks. He underwent an endoscopic third ventriculostomy (ETV) and Rickham reservoir placement at one week old and only spent 16 days in NICU before going home. When he was two months old Cohen was showing signs of treatment failure and was admitted to Comer Children’s Hospital. An MRI revealed a large subdural fluid collection, so an external drain was placed to help relieve the pressure. After a week of no improvement he underwent another brain surgery to place a subdural-peritoneal shunt. Cohen began therapy services at three months old through the Illinois Early Intervention program. Although a majority of the sessions included keeping him from having a complete meltdown, we knew that with a little patience and a lot of hard work it would prove to be more than beneficial. Cohen also participated in Duke University’s cord blood therapy trials conducted by Dr. Joanne Kurtzberg in both Fall 2014 and Winter 2015. At four months old Cohen was, again, displaying symptoms of a shunt failure. To our excitement, the shunt had not failed and the subdural fluid collection had completely drained relieving the external pressure. However, it was allowing his ventricles to expand and increase internal pressure. A second catheter was attached to his existing shunt system and placed in his ventricle to regulate the fluid. Shortly after coming home Cohen’s therapy resumed and we began to see more improvement every day. During Spring 2015 Cohen was diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. Not much is known of the syndrome, but despite this we have enrolled him in a study through the University of Washington and see a developmental pediatrician at Seattle Children’s Hospital to help guide us through the uncharted territory. Along with his four brain surgeries Cohen has had PE tubes placed, his tonsils and adenoids removed, strabismus correction, and a tethered spinal cord release. Though he's been through a lot, Cohen is happiest kid and doing everything the doctors told us he wouldn’t, he may hit milestones at his own pace but he always surpasses them with determination in his eyes and the widest grin on his face.
