A New Ear: Lilliana’s Story

Published on

When she was born in 2018, Lilliana’s parents, Angelina and Sergio, noticed their daughter’s facial features looked different. What they could not see was that Lilliana was also completely deaf in her right ear.

After a screening indicated challenges with Lilliana’s hearing, doctors in Poconos, Pennsylvania, where the family lives, recommended continued monitoring by her pediatrician. But they did not have a diagnosis for her condition. Angelina knew there was more that could be done to figure out what was going on with Lilliana and called Children’s Hospital of Philadelphia (CHOP) for an appointment. Soon the family was making the two-hour drive to have their then two-year-old seen by Jordan W. Swanson, MD, attending surgeon in the Division of Plastic, Reconstructive and Oral Surgery at CHOP. 

A diagnosis of hemifacial microsomia

Lilliana was diagnosed with hemifacial microsomia, a condition at birth where the tissues on one side of the face are smaller than the other side. It primarily affects the ear, mouth and jaw areas. Some of the physical differences Angelina and Sergio could see were Lilliana’s missing right ear, that her chin pointed slightly to the right side and that there was some tilting of her jaw and teeth. They learned from Dr. Swanson what they could not see -- that Lilliana had no ear canal and was completely deaf in her right ear.

Dr. Swanson told them the most common way to treat hemifacial microsomia is through surgery. Lilliana would have to undergo a series of surgeries to reconstruct her ear and realign her jaw. 

A challenging decision

Lilliana’s parents felt nervous about deciding on surgery for Lilliana, knowing it would impact the rest of her life. So, they included her in the decision-making process. Lilliana wanted two ears. She would never be able to hear in her right ear but ear reconstruction surgery would help her to feel more comfortable and less different. 

Though the idea of surgery was overwhelming, and Lilliana would have to wait a few years for her new ear, Angelina says the support from Dr. Swanson and CHOP staff made it easier. “We trusted Dr. Swanson. Lilliana loved him and looked forward to seeing him. They had built their own special relationship.” Lilliana underwent surgery at CHOP in April of 2023 at age five.

Surgery and recovery at CHOP

To make an ear for Lilliana, Dr. Swanson and the surgical team at CHOP used an implant (polyethylene ear framework) to create the ear shape, then covered it with a flap of tissue (fascia) from the scalp that had its own blood supply and allowed a skin graft to be placed over the top. Following the six-hour surgery, Lilliana only experienced mild discomfort. Her mother described her as “wanting to do cartwheels and headstands in the hospital room.” After an overnight stay, Lilliana was able to go home.

Over the next few months, Lilliana’s ear healed under Dr. Swanson’s watchful eye. For the first two, her ear remained wrapped in gauze, with her mother unwrapping, cleaning and applying medication to the area once per day. Lilliana continued to be pain-free.

Lilliana’s new ear

By September, Lilliana’s ear had healed completely. She can now play normally, and loves being a cheerleader. She even got to visit Walt Disney World with her family as a reward for making it through the challenging surgery and recovery process. 

Because of her hemifacial microsomia, Lilliana will need jaw surgery in the future. It is a much more complex procedure, and doctors will wait until her adult teeth begin to come in so they can get a better idea of what her jawline will look like. For now, Lilliana continues to show a zest for life, and loves to move and play with her two brothers. 

Angelina says, “This is not something you want any child to go through, but we had to make that choice for Lilliana because we want her to feel complete and whole. (Dr. Swanson) was able to give her something that we couldn’t, and we are forever grateful for that.” 

Craniofacial Patient Daniel

Watch: All About Craniofacial Conditions

Learn about the diagnosis and treatment of craniofacial conditions, including craniosynostosis, hemifacial microsomia, and other syndromes.

craniofacial patient playing basketball

Why Choose the Craniofacial Program

CHOP’s Craniofacial Program is one of the Nation’s leading treatment programs for children with both congenital and acquired anomalies of the face and skull.