In a time of instability, health crises, and stigma, screenwriter Christian Hadjipateras advocates for a positive change. With nearly 5.69 million diagnosed cases of COVID-19, Christian notes that there are a lot of people struggling physically and mentally. However, while mental health used to be more stigmatized, more and more people are recognizing the importance of acknowledging and supporting our mental health. As the world continues to change, Christian now asks for another change: reduced stigmatization for physical conditions, like his craniosynostosis.
Craniosynostosis
Doctors are not sure of the cause of craniosynostosis, a birth defect in which fibrous joints (cranial sutures) within the bones of a baby’s skull close before fully formed or developed. However, some believe it may be caused by genetics. Despite the joints closing, the brain continues to grow. As a result, the head and face can be misshapen.
There are four main types of craniosynostosis:
- Coronal: Coronal craniosynostosis occurs when one of the unicoronal sutures (from the ear to the top of the head) prematurely fuse together. This may result in a flattened forehead, with a bulge on the unaffected side. The nose and eye socket of the affected side are often turned and elevated.
- Lambdoid: This occurs when the lambdoid suture (which runs across the skull at the back of the head) is affected. This is the rarest form of craniosynostosis. Babies with this form may appear to have a flat head on one side, with the ear higher and the head tilted.
- Metopic: The metopic cranial suture starts at the top of the bridge of the nose and runs through the middle of the forehead, towards the anterior fontanel and the sagittal suture. However, when it prematurely fuses, the back of the head widens. The forehead looks triangular.
- Sagittal: This is the most common form of craniosynostosis. The sagittal suture, which runs along the top of the skull from the front to the back, prematurely fuses. It causes the head to become long and narrow.
Symptoms and characteristics of craniosynostosis include:
- Little to no head growth as the baby grows
- A misshapen or mis-developed skull
- An abnormal or disappearing fontanel
- The fontanel (or fontanelle) is the soft spot on a baby’s head. These soft spots are where the joints meet.
- A raised, hard ridge along the affected joints
Learn more about craniosynostosis here.
Christian’s Story
In the 1980s, the Hadjipateras family welcomed their new baby boy, Christian. But when he was born, he had several craniofacial abnormalities. In addition to his craniosynostosis, Christian had a bilateral cleft palate and hypertelorism, an abnormally large distance between the eyes.
His parents, in their 20s, lacked support. At that time, many support groups or patient advocacy groups were also not operating. As they raised Christian, they experienced many instances of stigma and stereotyping. According to Christian:
“My mother still remembers walking me down the high street and the looks people would give…even when I was a few years older, there were comments from tactless adults, never mind children. This was London; a society you’d have thought was generally educated and sensitive.”
As he grew up, Christian grappled with his condition. He underwent over 50 surgeries for his craniofacial abnormalities, many before he turned 21. Doctors sought to reconstruct the parts of his face and skull affected by his craniosynostosis and cleft palate.
Then, as he entered his 20s, Christian worked towards his ultimate goals: graduating college, working in the film industry, and learning to appreciate his differences. Because of the stigma he dealt with growing up, Christian:
“Opened up very little to anyone about my fears of the future and whether I’d ever get to where I wanted to be. I always felt that because I essentially spent most of my childhood in hospitals that I was playing catch up.”
Now, Christian realizes that his differences didn’t warrant the treatment he received. Some people are different, mentally and physically, but that’s okay! People with birth defects, rare diseases, or other conditions should be allowed to live their lives without added stigma and judgment.
Next Steps
Now, Christian lives in Greece and is pursuing his passion: screenwriting. But more than that, he seeks to advocate for other patients who feel shamed by their condition. He recognizes that facing the stares isn’t easy, but tells people to smile back in the face of adversity. Additionally, talking to friends or family about dealing with the stigma can relieve some of the burden.
Additionally, Christian asks people to learn about craniofacial differences caused by craniosynostosis and other conditions. Recently, the 2nd Annual Face Equality Week occurred from May 17-25. You can also learn find resources on craniofacial differences from the Children’s Craniofacial Association.
