Grace

Before starting high school, one of 10-year-old Grace’s biggest challenges will be learning to balance her glasses on two matching ears, having spent most of her life with only a single ear.

Grace was born a non-identical twin at 29 weeks with anotia (absent ear) and aural atresia (absent ear canal), which meant she was missing the entire ear on her right side. As a baby, she was also diagnosed with hemifacial microsomia, where the facial tissue is underdeveloped and ipsilateral facial palsy, which causes weakness of the facial muscles.

Since birth she has been treated by multiple specialist services, including a multidisciplinary craniofacial clinic, microtia clinic, plastic surgery, ENT (ear, nose and throat), ophthalmology, audiology, speech pathology and children’s oral health services.

Grace’s mum Debbie explains that her condition has never held her back.

“She’s a really resilient girl, she has always just taken everything in her stride,” Debbie said.

“When doctors suggested she was ready for an ear reconstruction, it was her decision to go ahead with it.”

This decision saw Grace become the first person in Queensland to receive a custom 3D-printed ear reconstruction in December 2020. The external framework for her new ear, which is made from a medical-grade porous polyethylene, was designed using 3D photography and a CT scan to create a mirror image of her opposite ear that was carefully modified to suit the differences between each side of her face.

“After surgery she was a bit reluctant to look in the mirror at first, she didn’t think it would actually look like a real ear,” Debbie said.

“But all she could say was ‘wow’, it looked so different.”

During the 12-hour procedure at the Queensland Children’s Hospital, a bone-anchored hearing device was also placed under her scalp to give her a permanent solution to assist her hearing. Previously, she needed to wear a soft headband to hold her hearing aid in place so that sound waves could be transported through the bone to her hearing side.

Debbie said she hopes Grace’s new ear will help her confidence as she gets older.

“While the kids at her school have always known her with one ear, and never treated her any differently, when she starts high school next year she will be meeting lots of new people and I think having two ears will help her to feel like she fits in,” Debbie said.

Grace continues to see specialists at hospital every two weeks, and it’s likely she will have further surgery when she is older to help improve the symmetry of her right jaw.