Articles and Updates from Phoenix Children's
If you listen close enough, you can hear when 6-year-old Aria Shapiro is nearby. She happily skips and sings wherever she goes, whether it’s Taylor Swift, Disney music or The Spice Girls. She’s energetic and full of life, and she tells funny jokes.
“Aria is a very animated girl; she’s not shy,” says Aria’s mom, Sarah. “She loves people.”
“And I’m quite the smart head,” Aria says.
At 3 years old, Aria was diagnosed with epilepsy caused by grey matter heterotopia, a neurological disorder that can cause seizures.
“Aria has some seizures where, unfortunately, she’s had trouble breathing,” Sarah says. “Her oxygen goes down and this is where you kind of head into a medical emergency.”
COVID-19 sends Aria’s seizures into overdrive
Unfortunately, Aria’s spirit was tested recently when she was hospitalized for 22 days at Phoenix Children’s due to complications caused by COVID-19. Prior to COVID-19, Aria had gone five months without a seizure.
Her mom Sarah said she wishes her daughter had been vaccinated sooner. Aria had received the first of her two doses of the COVID-19 vaccine when she contracted the virus.
“COVID-19 really, really put Aria on a path that I have never seen her epilepsy go in,” Sarah said. “Though my daughter has an underlying health condition, there’s a lot of other people that don’t have underlying conditions and their children are struggling with COVID-19. From what I’ve seen with my own eyes, COVID-19 isn’t safe for all children.”
In the emergency room at Phoenix Children’s, Aria went into status epilepticus, a condition of continuous seizing. She required breathing support with a ventilator and that’s when she was moved to the pediatric intensive care unit (PICU) for two days.
“It was the most surreal, terrifying and traumatic experience,” Sarah recalled.
Aria’s Phoenix Children’s family
Thankfully, Sarah said Aria doesn’t remember the most traumatic parts of her illness, and they both feel grateful and blessed to live in Phoenix and have a specialized pediatric hospital so close to home.
“Phoenix Children’s is a huge, very busy health system but they’ve always provided Aria with timely care — especially neurology and endocrinology,” Sarah said. “There are tools in place to get timely answers and guidance from her care team; you don’t find that everywhere.”
Aria’s neurologists Dr. Korwyn Williams and Dr. Jason Santiago have been working with Aria to achieve her goal of seizure freedom, including by managing her epilepsy medications and side-effects. They were right alongside Aria during her hospitalization.
“Dr. Williams is very patient and knowledgeable, but also realistic and honest,” Sarah says. “He is very kind and has an amazing bedside manner.”
Sarah is a true advocate for Aria and wants to understand all aspects of her care plan. She says that Dr. Williams has been so helpful in her quest to understand the ins and outs of neurology, that she now wants to go back to school for neuro research.
Dr. Santiago was instrumental in creating a bridge plan for Aria. Illness of any kind, including a fever, is especially dangerous for Aria because of her epilepsy. Dr. Santiago’s plan included preventive small doses of rescue medication to prevent a seizure.
Aria’s day to day care team also includes Dr. Sara Kertz, a pediatrician at Phoenix Children’s Pediatrics — Paradise.
“Dr. Kertz is the best pediatrician in the world,” Sarah says. “She makes herself available for problems and concerns. I recommend her to all my friends whenever they have a baby.”
Recovery and search for a service dog
Aria was discharged from the hospital after a few weeks.
“Phoenix Children’s does a good job making the hospital feel like home, but there’s nothing like sleeping in your own bed,” Sarah says.
Aria is doing better, but is now facing a new challenge, hyponatremia — which occurs when the sodium in your blood is too low, and in and of itself can lead to seizures. These seizures can be especially dangerous because they present with no movement or sound. Aria is working with Dr. Pamela Smith, a pediatric endocrinologist at Phoenix Children’s to treat this endocrine disorder.
Aria wears a pulse oximeter that alerts her mom if she stops breathing and has motion detectors in her room, but her family is hoping to get a specially trained seizure dog. Included in their training is putting their heads under a person’s head to open airways.
While the journey isn’t over for Aria, Sarah said they’re still trying to find some normalcy. They have follow-ups with her neurologists and Dr. Smith, but Aria’s joyous spirit has returned.
When asked what she’d tell other kids either sick with COVID-19 or scared to get their vaccine, Aria said, “Be brave.”
Sarah says her daughter is very empathetic and can sense other people’s emotions.
“Sometimes she just knows the right words to say,” Sarah said.