“Now she can be just Hailie. Not the kid with medical issues.” – Melody Mussinan
Three-year-old Hailie Mussinan of Fords, New Jersey was having headaches and was vomiting. She was taken to a few doctors, who thought she had sinus issues. However, all that changed on October 2, 2012, following an outpatient MRI at St. Peter’s Hospital. Hailie was immediately diagnosed with a brain tumor. Says her mother Melody, “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.”
In the meantime, Hailie was enveloped in chaos, and immediately rushed to a hospital room and connected to IV’s. Then, several doctors came in to speak with her parents; among them Dr. Arno Fried of Advanced Neurosurgery Associates (ANA). They explained that Hailie’s condition required immediate surgery. But their manner was the “best medicine” possible in that moment. “Their demeanor and knowledge was extraordinary. Immediately it was like a weight lifting off of us,” says Melody.
In addition to a brain tumor, Hailie was also diagnosed with hydrocephalus. Her tumor, juvenile pilocytic astrocytoma (JPA), is a rare childhood brain tumor. However, Hailie’s was a low-grade cancerous tumor.
Prior to her surgeries, Hailie was a rather quiet child. She would sit on the sidelines while her sisters ran around. And while her mother just assumed that was Hailie’s personality, the pain her daughter was enduring was likely affecting her.
“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,” relates Melody.
It was a golf ball-sized tumor surrounded by a softball-sized cyst in a 3-year-old skull. “You can imagine that the pain inside her head was horrible,” says her mother. One saving grace is that Hailie did not need to undergo chemotherapy.
Hailie initially had required an EDD (external drainage device) put in the day of her MRI, and two days later, a craniotomy. Several days after that, she needed a shunt*. She was about to be discharged a few days after getting the shunt, when she had a seizure and experienced shunt failure. The shunt was removed, and another EDD put in. High dose antibiotics were administered, as she required a new IV inserted daily. “She was poked and prodded,” says her mother. “It was not the easiest.” The tally: five surgeries in 22 days.
Reports Melody, “The entire time Hailie was in the hospital, I did not leave. I barely saw my other children, or my mom. My husband and I own a small business. He would work, come home, do laundry, and come to the hospital to see Hailie and drop off dinner for me.”
“The doctors at ANA and nurses in the pediatric ICU literally become my family; they were who I cried to. You literally lose your mind. I don’t how I would have made it without the physician assistant, Jen (Battiato). She went above and beyond. She was my rock. She would come in every day and say, ‘Things are going to be okay.’ She was the comfort I needed.”
Hailie left the hospital on October 31, 2012. That summer, she was seen by pediatric plastic surgeon Dr. Frank Ciminello for a shunt incision revision, which comprised her sixth surgery, performed in summer, 2013. “I love him; he’s wonderful and so kind. I didn’t have a doctor referred to me by Dr. Fried who wasn’t fantastic,” says Melody. Hailie recently underwent her seventh surgery, a double eye procedure for problems caused by her hydrocephalus.
Every six months, Hailie visits Dr. Fried, who checks up on her shunt and makes sure the tumor is not re-growing. Her last check-up was in summer, and the results “were fantastic,” says her mother. The shunt is doing well. No sign of tumors.
“There’s no way to say thank you,” says Melody. “Every time I see Dr. Fried and say that, he answers with a smile and ‘this is my job’. 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. With a kid with hydrocephalus, you can’t just blow off a headache. So every time I call with a concern, they call me right back.”
Despite all those surgeries, Hailie has handled it extraordinarily well. And after being in so much pain, Melody reports her daughter has transformed into a whole different kind of child. She just started school in September and is finally opening up. “Now she can be just Hailie. Not the kid with medical issues,” concludes this grateful mom.
*Shunting, which began in the 1950′s, 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.
Hailie Mussinan was selected as one of two children to serve as the 2014 “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation (PHF) to help raise the level of awareness and education about hydrocephalus in the United States.