Alessia's Apert Syndrome Story

Alessia's Apert Syndrome Story

“Alessia has a very fun personality. She’s very social — she likes to say hello to people,” Alessia’s mom, Amanda, said. “We found out something was wrong with Alessia the day she was born. I ended up having an emergency C-section, and when they took her out, all the bones were fused together on her head. I didn’t know if she was alive.”

Alessia was diagnosed with Apert syndrome at birth, a rare condition that causes the bones in the head, hands and feet to fuse together abnormally. 

Alessia’s parents searched for specialists that could treat Alessia and found our team at University Hospital. Alessia’s dad, Pablo, said, “I started researching the best doctors we could find, and everything led to University Hospital. Right away we felt confident and excited that we had somebody in San Antonio.”

Dr. Izabela Tarasiewicz is a pediatric neurosurgeon at University Health and was part of the team that treated Alessia. “Multiple sutures on her head were closed prematurely. This restricts head growth and causes increased brain pressure,” Dr. Tarasiewicz said.

Alessia’s surgical team at University Health planned her surgery virtually, using a 3D CT scan of her skull.

Dr. Mark Miller, a craniofacial surgeon at University Health, said, “So one of the great things we did with Alessia is we did virtual surgical planning. We … actually make those movements in the computer before we ever touch Alessia. We were able to look at her post-operative scans and see that we achieved exactly what we wanted to do.” 

After several successful surgeries, Alessia has a bright future ahead of her. “I couldn’t be more pleased,” Dr. Miller said. “She’s exactly where I would want her to be.”

Now, Alessia gets to grow up and play like other children.

“University Health is an extension of our family,” Pablo said. “It’s alleviated a lot of our fears. Most of all, I think it’s given us a lot of hope for Alessia. I couldn’t have asked for anything better.”

Pediatric Neuroscience at University Health

Learn more about the life-changing treatments our team provides to children with brain and spine conditions.

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