'Golf ball-sized?'

“I don’t want this to be something I’m missing. Am I just acting paranoid?”

As a first-time mom, Charla Hilliard was concerned about a bump growing on the back of her 4-month-old daughter’s head and brought it to her pediatrician’s attention during a routine appointment.

Alley Mae seemed a bubbly, bright and healthy baby with no signs of ailment or cause for worry. She loved feeding time, giving kisses and bouncing up and down. Her pediatrician believed the bump was normal; a result of her sutures, or fibrous joints, closing in order to form the solid bone in her skull.

A month passed, and the bump seemed to be only getting bigger. Even family friends began to express concern. Charla pushed for further evaluation of the bump on Alley Mae’s head, knowing the nervous feeling at the pit of her stomach wouldn’t go away until she got definitive results that everything was OK.

Alley Mae was sent for a cranial ultrasound, which still produced no real results as to what the abnormal golf ball-sized bump might be. Her medical team had never seen something like the fluid-filled sac before and needed to perform a magnetic resonance imaging (MRI) scan to produce a more detailed picture of Alley Mae’s brain.

“We were at our community’s regional hospital, which provides great care for both adults and children,” explained Charla. “But the staff mentioned that Alley Mae would need anesthesia in order to remain completely still for the long period of time needed to complete the MRI scan. There were also other special needs required to perform the scan on babies and children compared to adults. It was at that moment that my husband, Blake, and I knew we needed to seek help from an expert team of pediatric specialists in a setting catered specifically to kids.”

A second opinion

A family friend familiar with Alley Mae’s situation recommended Wolfson Children’s Hospital of Jacksonville after her own son had received specialized care there for a neurosurgical condition.

Despite many obstacles brought on by the pandemic, Alley Mae was able to get an appointment with the pediatric neuroscience team at Wolfson Children’s Walter and Michelle Stys Neuroscience Institute within a matter of weeks. Once there, she met with a pediatric neurosurgery team that would go on to be by her side through diagnosis, treatment and recovery.

“Alley Mae had developed another soft spot on the side of her head that was pulsing by the time she got to us,” said Philipp Aldana, MD, co-medical director of the Stys Neuroscience Institute of Wolfson Children’s, medical director of the Lucy Gooding Children’s Neurosurgery Center and pediatric neurosurgeon with Wolfson Children’s and UF College of Medicine – Jacksonville. “It was an unusual kind of cyst, so I requested an MRI to make sure we weren’t missing anything."

After undergoing a high-resolution MRI, Alley Mae was diagnosed with desmoplastic infantile ganglioglioma (DIG), a rare childhood brain tumor that has been reported in less than 100 cases since 2017. She was immediately admitted for an inpatient stay, and Dr. Aldana cleared his schedule for an eight-hour surgery the very next day.

“Hearing Dr. Aldana tell us that it was a tumor is a moment I will never forget,” said Charla. “It felt surreal. We knew something was wrong with her head, but I don’t think we could have ever expected just how severe it actually was.”

Charla added, “But the way that Dr. Aldana and the nurses and staff treated us brought immense comfort and hope. The priority that Dr. Aldana placed on Alley Mae’s procedure and care reassured us that she was in the best hands possible and that we made the right decision by coming to Wolfson Children’s. The way the nurses thoughtfully explained every detail of what was going on made us feel so supported, too.”

Glowing tumor

Dr. Aldana and his team used cutting-edge, advanced technology to make it easier to see and remove Alley Mae’s brain tumor.

“These types of tumors are usually located deep within the central portion of the brain and grow relatively slowly,” said Dr. Aldana. “The biggest challenge during surgical removal is distinguishing the tumor from regular brain matter as they look very much alike. Visibility and the tumor’s exact position can also hinder the success of the surgery.”

Dr. Aldana added, “Alley Mae’s tumor was three inches by two inches in size, so around the size of a golf ball. A tumor like that would have been considered big in any person, but especially in a 6-month-old baby.”

Similar in function to a real-time GPS navigation system for the brain, Dr. Aldana used an image guidance system during Alley Mae’s surgery to help increase accuracy and avoid damage to surrounding healthy tissue. Images provided by her MRI scans were uploaded into a computer attached to a special camera system that tracked the exact position of the surgical instruments as they worked inside her brain.

A special fluorescent dye was also given to Alley Mae during surgery to help make her tumor more easily distinguishable from the healthy parts of her brain. Using the fluorescence modules and a high-tech, minimally invasive surgical microscope – technology available at only a few children’s hospitals in the country – Dr. Aldana was able to light up Alley Mae’s tumor like a bright yellow ball. Its color greatly contrasted against the healthy brain matter, which glowed white.

“This cutting-edge technology came into good use in Alley Mae’s particular case,” said Dr. Aldana. “There was a part of the tumor that I wasn’t sure if it was healthy brain matter. Once I directed the fluorescent light from the surgical microscope toward the specific area, it lit up a bright yellow color, letting us know that it was, in fact, tumor.”

On the other side

Despite the odds, Dr. Aldana was able to fully resect, or remove, all of Alley Mae’s tumor. She and her family were able to go home six days later.

“I’m so glad I trusted my gut and pushed to get the bump on Alley Mae’s head checked out,” said Charla. “Dr. Aldana told us that if this had been overlooked and Alley Mae didn’t have surgery, she could have developed symptoms like seizures, abnormal sensations, leg weakness, vision problems and so much more. I don’t know what I would have done if I would have been home with Alley Mae and these symptoms began out of nowhere.”

Today, Alley Mae is a healthy, happy-go-lucky toddler who loves "Shrek" movies, being outside and anything to do with water. She continues to be monitored by Dr. Aldana and a team of specialists with Wolfson Children’s and Nemours Children’s Health, Jacksonville, but the likelihood of her tumor returning is small.

“Alley Mae will need follow-up MRI scans every year for the next couple of years in order to make sure her tumor hasn’t returned,” said Dr. Aldana. “But other than that, we’re focused on making sure she continues to thrive and that she is meeting all of her milestones and progressing as a toddler should be.”

“I don’t see how people don’t believe in miracles,” said Charla. “I’m personally living one with my Alley Mae. I can’t even put into words how everything lined up for us to receive care from Dr. Aldana and the rest of the medical staff at Wolfson Children’s. I don’t think we would have gotten as excellent of care if we would have gone anywhere else. Blake and I are eternally grateful for what they did for Alley Mae.”

Just like with the Hilliard family, Wolfson Children’s Hospital aims to give children what every family wants: a second chance.

The Walter and Michelle Stys Neuroscience Institute at Wolfson Children’s provides expert care for children ages 0-18 with a wide range of neurological and neurosurgical services, from epilepsy to brain tumors. To learn more, visit wolfsonchildrens.com/neuro.