Patient diagnosed with rare brain condition wanted to help other kids by donating toys and gifts from her July birthday

When Hayden Smith was only 6 years old, she told her mom she was having some dizziness. They made an appointment with pediatric ophthalmologist Dawn Duss, MD, for an eye exam. Dr. Duss ordered an MRI to rule out serious health conditions.

The family was shocked to learn that Hayden might have a rare but serious at-birth (congenital) brain condition called Chiari malformation, in which there isn’t enough space in the skull for the brain. Dr. Duss referred Hayden to pediatric neurosurgeon Philipp Aldana, MD, co-medical director of the Stys Neuroscience Institute at Wolfson Children’s Hospital.

Dr. Aldana explained the complex condition: “In Hayden’s case, the structure at the bottom of the skull that contains the brainstem and the cerebellar tonsil, or the opening behind the brain, was obstructing the flow of spinal fluid, which led to multiple cysts forming in her spinal cord. You can have this condition throughout childhood without having symptoms, which was the case for Hayden.”

While the dizziness was unconnected to the diagnosis of Chiari malformation for Hayden, her referral to Dr. Aldana was critically important. “The area of the brain that was affected in Hayden’s case controls many functions,” said Dr. Aldana. “Undiagnosed and untreated, it could’ve led to permanent numbness or weakness in her body, trouble swallowing and trouble with balance and coordination.”

Hayden’s mother, Laura Smith, remembered, “When we talked to Dr. Aldana and his advanced practice partner Alyssa Tamasi, APRN, it was clear that this wasn’t a choice of if you do or don’t do surgery for this. It needed to be done and right away. We were crying when we heard that Hayden needed this surgery and probably spent close to an hour in the room asking questions. Dr. Aldana and Alyssa didn’t rush us at all. They answered all of our questions and made us feel at ease. That’s when my heart told me Dr. Aldana was who we needed to heal Hayden.”

Hayden’s surgery was scheduled for July 8, 2021, six days before her seventh birthday. “Every time she went for an MRI or was in the hospital, she received toys from Child Life and they recognized that her birthday was coming up and made her feel extra special,” remembered Mrs. Smith. “We felt so comfortable every time we were at Wolfson Children’s Hospital.”

Dr. Aldana and his team performed surgery to remove Hayden’s C-1 vertebrae in a laminectomy, in which he also removed part of the base of her skull to allow more space for her brain and spinal cord. The surgery was successful; the cysts shrunk significantly, allowing spinal fluid to pass more freely. Her follow-up went so well that, after her 1-year and 3-year checkups, Dr. Aldana cleared Hayden so her next follow-up isn’t needed for another 3 years.

Hayden mentioned often that she wanted to help other kids at Wolfson Children’s Hospital. She decided that this year she wanted to do something special for her 10th birthday party.

Hayden, now a fourth grader, said, “I wanted to have a party and donate all my presents to Wolfson Children’s Hospital. I wanted every child to have a smile like I did before my MRIs and surgery.” Hayden’s friends were all on board with this idea and went above and beyond with bringing gifts to her birthday party for her to donate to the hospital.

While Hayden had a successful outcome from neurosurgery, her health journey was far from over. Shortly after being diagnosed with Chiari malformation, she began having pain in some of her joints. Within a couple of months after surgery, she was diagnosed with Juvenile Idiopathic Arthritis (JIA) by UF College of Medicine – Jacksonville pediatric rheumatologist, Jennifer Rammel, MD. The condition is unrelated to the Chiari malformation. Prior to these health conditions, Hayden was falling in love with the sport of soccer.

Still, that hasn’t stopped her from playing soccer. “We were wondering if she'd be able to play again,” said Mrs. Smith. “But she didn’t let JIA slow her down at all.” She played on her recreational league, with clearance from Dr. Aldana and Dr. Rammel, and then moved to travel soccer with their blessing. She has been playing competitive soccer for two years and is about to begin her third year on the top team with the Jacksonville Football Club. “We feel really blessed to have this friendly, outgoing child who makes us so proud and doesn’t let anything get in the way of her dreams.”

Wolfson Children’s Hospital has made an impact on Hayden and the Smith family. Hayden explained, “I am at Wolfson Children’s Hospital a lot for MRIs, bloodwork, and appointments. Every time I’m there, they treat me like family. I love Wolfson Children’s Hospital!”