I’m Michael Breyare, a junior at The Einstein School, and I want to share with you my medical journey over the past eleven years. I was born with a congenital anomaly called Hemifacial Microsomia. Don’t be surprised if you haven’t heard of it…it’s very rare! It affects 1 in 3,500-4,000 births and is the second most common facial anomaly after cleft palate. There is no known cause. “Hemifacial” means “half of the face”. “Microsomia” means “smallness of body structures.” So….Hemifacial Microsomia means the structures on one side of my face are smaller than the other side. It varies from person to person in severity.
For me, the key areas that are affected include:
- My facial nerve on the affected side is weak. This means that my smile might look a bit crooked and my eye has a hard time blinking/squinting.
- My ear on my affected side was malformed when I was born. This is called microtia. Again, don’t worry if you’ve never heard of it – it is also very rare!
- I have single-sided deafness on my affected side. This causes me to have problems telling where sound is coming from and hearing a speaker in a large, loud crowd (like a restaurant). Trying to hear in these environments can be exhausting and frustrating.
Eleven years ago, I had surgery to put in a medpor implant (prosthetic ear) with Dr. John Reinisch at Cedars Sinai in California. We had to stay out there for a month after my first surgery to make sure it was healing OK. I had a total of three surgeries with Dr. Reinisch to reconstruct the ear between the ages of 5 and 8. We moved to Dallas, TX and began to see the craniofacial team at Dallas Children’s Hospital. I had four reconstructive surgeries there to work on my facial symmetry – adding tissue to bulk up the cheek. They also put an eyelid weight in to help my eye blink but we ended up taking that out because it was not effective. At 15, my family and I journeyed back to California to see Dr. Reinisch for a fourth time and to have some revisions done to my ear. Finally, at 16, I went to Johns Hopkins Hospital to see the chief of plastic surgery to work on the tissue symmetry on my cheeks. This procedure went a little awry because I ended up getting a hematoma and recovery took longer than expected. The good news is that I was able to spend two months at my grandparents’ beach house resting and recovering!
So if you see that I have scars on my cheek it is due to all the surgeries I have had. And if you ever wonder about the scars – just ask! This year we are going to explore a Bone Anchored Hearing Aid (BAHA) to help with my hearing. I’m hopeful that it might help me hear and focus better. This also requires a series of surgeries. Never a dull moment on this journey! I have learned a lot through this journey. I’ve learned that acceptance is key – what makes me different is what makes me ME.
“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences”. Audre Lorde