Seven-year-old Hope loves music, dancing, reading, coloring and playing outside with friends. She is in her church’s singing group, attends public school and eagerly takes part in everything around her.

But before she joined her family in Lancaster, Pa., Hope’s future looked very different.

Hope was born in India with hemifacial microsomia, a rare congenital condition that causes the underdevelopment of bone and soft tissue structures of the face. The condition shows itself differently in each person, and can possibly affect the ears, jaw and eye region. Usually, the two sides of the face are not symmetrical. In Hope’s case, she was born without ears. Her path to treatment would begin when Bethany and Walter made the decision to welcome her into their family through international adoption.

Finding options and reassurance

Bethany and Walter had three biological children, but they felt called to adoption.

“Every child deserves a family,” Bethany says.

As part of the international adoption process, families are asked to specify what medical needs they are prepared to manage. In 2020, Bethany and Walter learned about a young girl who was available for adoption.

“We got information about a girl in India, and she was born without ears," Bethany recalls.

Seeking guidance, the family reached out to a friend who is an ear, nose and throat specialist, who explained that several options exist for reconstructing ears. They also connected with the International Adoption Health Program (IAHP) at Children’s Hospital of Philadelphia (CHOP). Bethany sent Hope’s medical records to Rachel Hachen, MD, MPH, who carefully reviewed the records and recommended getting additional information about the little girl.  

“She reassured us — this is what you’re looking at, and this is how it can be handled medically,” Bethany says. “Honestly, it gave us such peace of mind.”

In March 2021, Bethany and Walter brought Hope home.

Multiple tests and a multidisciplinary team

Soon after Hope’s arrival, she was seen at the IAHP, where she had a complete physical exam and developmental testing. The family also met with the team’s attachment therapist, who provided guidance on post-adoption parenting, especially for a young child who will need to be seen by multiple doctors and have many procedures.

Dr. Hachen ordered what Bethany jokingly calls “a bazillion tests,” including an MRI, labs, an ultrasound, consultations with genetics and audiology, and most importantly a visit with the CHOP Craniofacial Program.

Once a month, the Craniofacial Program schedules a day when patients can see all the members of the program’s multidisciplinary team. Dr. Hachen got Hope in on one of those team days and connected the family with Jesse A. Taylor, MD, Chief of the Division of Plastic, Reconstructive and Oral Surgery, Co-Director of the Craniofacial Program and CHOP’s Surgeon-in-Chief. 

“That was huge,” Bethany says. “CHOP was there for us for all that.”

“Hemifacial microsomia is not that common,” Bethany explains, “but when we saw Dr. Taylor, he said, ‘Yes, this happens, we’ve seen this.’”

Genetic testing later confirmed that Hope's condition was not genetic. In this regard, Hope is like many people with hemifacial microsomia. In most cases, the condition is not inherited and happens by chance, with no identifiable cause.

For Hope’s first year with her family, the care team’s guidance was simple: “They encouraged us that in the first year, we just should bond with her,” Bethany says. It is important for children who are recently adopted to have ample time to develop that critical attachment to their new “forever” family.

‘Her hearing is amazing’

After her adoption, her family realized that Hope could hear limited sounds such as loud noises. Working closely with CHOP audiologist Christine Nicholson, AuD, Hope was fitted with bone-conduction hearing devices attached to a soft headband. The devices were customized to give her access to speech and other sounds to support speech and language development.

When Hope was 4 years old, Bethany began discussing ear reconstruction with Dr. Taylor.

“He could tell I was apprehensive,” she says.

Ultimately, and with the support of the team at CHOP, the family chose to pursue ear reconstruction surgery in California using a MedPor polyethylene framework to create the shape of the ears. Throughout the process, Bethany says Dr. Taylor remained a trusted partner.

“He said, ‘We'll still be your team.’”

Hope underwent reconstructive surgery and surgical placement of a bone-conduction hearing device (so that the soft headband would no longer be needed) on her left ear first, followed by the right ear nine months later. Today, she has reconstructed ears as well as the implanted hearing devices for both of her ears.

“We go to CHOP regularly for her audiology appointments,” Bethany says. “Her hearing is amazing. She went from only being able to hear sounds, like banging on a pot, to hearing that’s almost as good as ours. There are a few things she can’t hear, like leaves rustling.”

The transformation was life-changing. “This world that she didn't have is now open to her,” Bethany says.

Comprehensive support

As Hope grows, her CHOP team continues to monitor other aspects of her condition. She has some facial paralysis, which is common among children with hemifacial microsomia. For now, the family and care team are taking a thoughtful, patient-centered approach.

In the future, Hope may choose to pursue treatment to create a more symmetrical smile. Her care team has also discussed the likelihood of jaw-related surgeries during her teenage years as her facial development continues.

As Hope gets older, Bethany and Walter will ask her which surgeries, if any, she wants to have. In the meantime, the Division of Plastic Surgery’s psychologist gives her different ways to respond when someone asks, “Why is your smile like that?”

For Bethany, the comprehensive support the family has received at CHOP is one of the most meaningful parts of their journey.

“They've seen so many different children,” she says of the team at CHOP. “All the specialties are connected. You’re never alone in this.”