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  • 4-Year-Old Hailie Mussinan From New Jersey Selected as 2014 National “Face” of Hydrocephalus Awareness for Incurable Brain Condition

    January 12, 2014 by  
    Filed under Uncategorized

    MEET HAILIE MUSSINAN

    4-Year-Old Hailie Mussinan From New Jersey Selected as 2014
    National “Face” of Hydrocephalus Awareness for Incurable Brain

    Last year our then 3 year old Hailie started having headaches daily sometimes followed by vomiting. We also noticed her balance was off and her eye would slightly turn in at times. We took Hailie to a pediatrician, an eye doctor, and a neurologist who all assured us that it was most likely sinus related. Although her Mother kept insisting something was seriously wrong!

    October 2nd of last year Hailie was scheduled for an outpatient MRI. We were quickly admitted shortly after that and she was diagnosed with Hydrocephalus and a cancerous low grade brain tumor; Pilocytic astrocytoma.

    Hailie needed an emergency surgery to put in an external drain to relieve the pressure from the Hydrocephalus. Two days following she had a craniotomy and we are blessed to say the tumor was fully resected! Days following the craniotomy a shunt was placed but not for long.The night before we were to get released she had a seizure and a very high fever.

    The shunt was removed and another external drain was put in place. Hailie spent the next few days sleeping naked on ice filled cloths to bring the fever down. She was on a very strong antibiotic for 14 days which was hard on her veins during which IV changes were frequent to treat the shunt infection. Finally she was ready for a new shunt and we were able to go home on Halloween.

    She had a total of 5 brain surgeries in 22 days! In the summer of 2013, Hailie had another surgery because her shunt incision was not healing correctly. She has also been diagnosed with some eye issues from the Hydrocephalus and tumor. We are in the process of trying correctional therapy.

    Today Hailie is a happy 4 year old who loves to dance and is looking forward to starting school next year!

    Together as a family we are blessed to have found, and be apart of the Pediatric Hydrocephalus Foundation and Hailie is honored to represent the Hydrocephalus girls in 2014!!!!

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