Hailie Mussinan, of Woodbridge, is just 5, and she already has had a staggering seven surgeries.

An MRI on Oct. 2, 2012, revealed Hailie had a brain tumor that required immediate surgery. At St. Peter’s University Hospital, Hailie’s parents met with Dr. Arno Fried of Advanced Neurosurgery Associates (ANA).

“(Dr. Fried and his team’s) demeanor and knowledge were extraordinary. Immediately it was like a weight lifting off of us,” said Melody Mussinan, Hailie’s mother. “They couldn’t initially tell us anything — what kind of tumor, whether she was going to live. As parents, we were petrified waiting to find out what was happening to our child.”

Hailie was diagnosed with a juvenile pilocytic astrocytoma (JPA), a rare childhood brain tumor, the accumulation of cerebrospinal fluid (CSF) in the brain that can cause enlargement of the head and, in some instances, brain damage.

“When Dr. Fried did the craniotomy, he told me that the skin of her skull was so thin from the pressure of such a large tumor that he actually started seeing the tumor before he cut into it,” Melody Mussinan said, adding that the tumor was described as the size of a golf ball, surrounded by a softball-sized cyst.

“You can imagine that the pain inside her head. Hailie was always the quiet kid who sat on the steps with Mom and Dad and watched her sisters play in the yard. We always just thought that was her personality.”

Before her initial MRI, Hailie was said to be frequently vomiting and coming down with headaches.

“I never left Hailie’s side,” her mother said. “I never stepped foot out of her hospital room. My family and friends were helping around the clock to care for Hailie’s three sisters so that my husband could work our small family business and come to the hospital. The doctors at ANA and nurses in the pediatric ICU literally become my family. They were who I cried to.”

Hailie needed an external draining device (EDD) and a craniotomy, followed by a shunt, which entails the “placement of a tube (the shunt) in one of the brain’s ventricles or into the space of fluid in the spine in order for the spinal fluid to be safely absorbed.” Just days before being discharged, Hailie went into a seizure simultaneously as her shunt failed. Hailie was given a high dose of antibiotics as well as EDD and shunt replacements.

Hailie was discharged on Oct. 31, 2012. In 22 days, she had accumulated five surgeries.

“For such a little girl, my husband and I are enamored by her strength,” her mother said.

In the summer of 2013, Hailie underwent a shunt incision revision under pediatric plastic surgeon Dr. Frank Ciminello. This past October, Hailie underwent a “double eye procedure for problems caused by her hydrocephalus.”

“Besides (her visits every six months to) Dr. Fried, Hailie … gets an MRI with IV sedation every six months to make sure there is no tumor regrowth and to check that the shunt is functioning properly,” her mother said.

Pediatric Hydrocephalus Foundation (PHF) selected Halie to be one of two children to serve as 2014 Face of Hydrocephalus Awareness to help spread awareness across the United States for the condition.

“There’s no way to say thank you. Every time I see Dr. Fried and say that, he answers with a smile and ‘this is my job,’ ” Melody said. “But he and the other doctors I’ve seen at ANA are amazing. They don’t have to do their job with such compassion. They care. Hailie is more outgoing. She runs and laughs alongside her sisters while we watch. To see that is a feeling you just can’t describe.”

Andrew Sutton is an editorial intern with the Courier News, Home News Tribune and MyCentralJersey.com

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