Patient of the Month: Tahila’s Journey with Goldenhar Syndrome

A Story of Strength, Compassion and Hope

For our July Patient of the Month, we introduce a young woman whose courage and quiet strength have inspired every person who has met her – Tahila Schaafsma.

Tahila was born with Goldenhar Syndrome, a rare congenital condition that affects the development of the eyes, ears, spine and facial structures. In Tahila’s case, she was born without an ear – only a small lower lobe on one side of her face. The condition, while uncommon, has shaped much of her medical journey from a very young age.

Over the years, Tahila has undergone eight surgical procedures, each one a step toward restoring balance, function, and confidence. She has previously been under the care of the Smile Foundation, where reconstructive surgeon Dr. Marshall Murdoch played an integral role in her early treatments.

In July, the Dr. Ansua Foundation had the privilege of stepping in to support Tahila on the next part of her journey. Dr. Ansua Steyn performed a delicate fat grafting procedure to lift the affected side of her face, helping to restore facial symmetry and support soft tissue where it had been underdeveloped.

It was a powerful moment – not just for Tahila, but for everyone involved. Her resilience is a reminder that beauty often grows in the places we’ve struggled the most.

What is Goldenhar Syndrome?

Goldenhar Syndrome, also known as oculo-auriculo-vertebral spectrum (OAV), is a rare congenital condition first identified in 1952 by ophthalmologist Maurice Goldenhar. The condition affects the development of several structures in the head and upper body, particularly the eyes, ears, spine, and facial bones.

Here are five important facts about Goldenhar Syndrome that can help bring deeper understanding to Tahila’s story and the journeys of others living with this condition:

1. It’s more than just an ear condition

While one of the most visible signs of Goldenhar Syndrome is a malformed or missing ear (called microtia or anotia), it’s far more complex than that. The syndrome can affect the jaw, cheekbones, eyes, spine, and sometimes even internal organs such as the heart or kidneys. Tahila’s missing ear is just one part of the broader facial asymmetry she lives with daily.

2. It often affects only one side of the face

In most cases, the syndrome is asymmetrical — meaning one side of the face is more affected than the other. This is true for Tahila, whose facial underdevelopment required targeted fat grafting to improve symmetry. The right side of the face is affected more often in Goldenhar patients.

3. The cause is still not fully known

Goldenhar Syndrome develops early in pregnancy, typically during the first 6–8 weeks, when the body’s foundational structures are forming. Researchers believe the cause may involve disrupted blood flow, environmental exposure, or random genetic mutations, though it is usually not inherited.

4. It’s rare, but not unheard of

Goldenhar Syndrome affects an estimated 1 in 3,500 to 1 in 25,000 live births. It is more common in boys than girls, though each case presents itself uniquely. The condition ranges from mild to severe, with varying needs for surgical and therapeutic intervention.

5. With care and support, individuals can thrive

Thanks to reconstructive surgery, hearing aids, and ongoing support, individuals with Goldenhar Syndrome can lead full and fulfilling lives. While the journey may include physical and emotional challenges, outcomes improve dramatically with early intervention and continued compassionate care.

Walking Beside Her

Tahila’s path has not been easy, but her spirit shines brighter than any setback she has faced. The Dr. Ansua Foundation is deeply honoured to be part of her journey, and we remain committed to helping patients like her receive not just treatment — but dignity, empathy, and a future they can step into with confidence.

If Tahila’s story has touched your heart, we invite you to support our work. Your donations help fund life-changing surgeries for patients with rare conditions who would otherwise go without care.