Cohen, 20 months

Cohen, young boy with hydrocephalusCohen 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, Cohen underwent his second 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.

A month later, 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 and placed in his right ventricle to regulate the fluid.

Shortly after coming home, Cohen’s therapy resumed and we began to see more improvement every day. It was a quiet winter with a second and final trip to Duke in January 2015. During the spring, Cohen was diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. Not much is known of the syndrome. Despite all this, we have enrolled Cohen in a study through the University of Washington and plan to see a neurodevelopmental specialist at Seattle Children’s Hospital in September in hopes to gain a little more understanding of what this diagnosis may bring.

Cohen is every bit of wonderful and doing everything the doctors told us he wouldn’t be able to do. Though his milestones may be at his own pace, he always surpasses them with determination in his eyes and the widest grin on his face. Our family could not be more proud of what he has accomplished in such a short time and take every day to celebrate him and the millions of others living with hydrocephalus.

We are all different, but there’s something kind of fantastic about that, isn’t there?


Tell us about your journey with hydrocephalus!

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