GIRL BORN WITHOUT HER LOWER JAW UNDERGOES MORE THAN 30 SURGERIES — THEN TURNS HER JOURNEY INTO A MESSAGE OF KINDNESS

When Nancy and Gary were expecting their first child, they already knew their baby might need urgent medical care after birth.

Doctors had discovered a serious congenital heart condition during pregnancy.

But when their daughter Emily arrived, the family encountered another unexpected challenge: she had been born without her entire lower jaw.

It was the beginning of a medical journey involving complex heart surgery, extensive facial reconstruction and years of treatment.

Two Serious Conditions From Birth

Emily was diagnosed with Goldenhar syndrome, a rare congenital condition that can affect the development of the face, ears and other parts of the body.

Her condition had severely affected the formation of her lower jaw.

She also had tetralogy of Fallot, a combination of four congenital heart abnormalities, including a hole between the heart’s two lower chambers.

Her heart condition required surgery, while her craniofacial differences would demand a much longer series of procedures.

More Than 30 Operations to Reconstruct Her Face

As Emily grew, specialists at Children’s Hospital of Philadelphia worked to address the complex structures of her face and jaw.

According to the hospital, she underwent more than 30 craniofacial surgeries during childhood.

Reconstructing her jaw was particularly challenging because the missing structures affected important everyday functions.

Despite the operations, the opening of her jaw remained approximately 12 millimeters, limiting her ability to chew and speak comfortably.

Doctors discussed the possibility of additional reconstruction with her family.

Emily Had Something Important to Say

After so many operations, her parents considered whether it might be better to avoid further surgery.

But Emily wanted to continue pursuing treatment that could improve her jaw function.

Her medical challenges extended beyond her jaw. She was also deaf in her right ear and received a cochlear implant.

Managing hospital appointments, recovery, therapy and school required enormous effort.

Her family continued supporting her through the physical and emotional difficulties associated with her condition.

She Wanted Other Children to Understand Differences

Emily experienced periods of emotional distress as she navigated growing up with a visible facial difference and repeated medical treatment.

Over time, she developed a personal mission: encouraging other children to practice kindness and acceptance.

She began sharing her experiences through presentations at schools, video conferences and social media.

Rather than allowing her appearance to define every part of her life, Emily wanted others to understand that children with visible differences deserve the same friendship, respect and opportunities as everyone else.

A Journey That Continues Beyond Surgery

When CHOP published Emily’s story, she was 14 years old and still facing further medical treatment.

Her journey had not reached a final surgical endpoint, but she had already found a meaningful way to use her experiences to help others.

For her parents, watching Emily develop her own voice became an important part of her progress.

Her story is not simply about a remarkable number of operations. It is about a young person who grew up facing extraordinary medical challenges and decided to help make the world more welcoming for other children.

Source: Children’s Hospital of Philadelphia, “Goldenhar Syndrome: Emily’s Story.”