Wednesday, April 04, 2012

Maggie | Living With Hemifacial Microsomia
Maggie is one of the happiest people I know. When I met her she had just started dating my brother Shane and was welcomed with excitement into the family. It is just impossible not to like her. I was shocked when I learned that her surgeries were not complete and that she would need to endure them most challenging surgery of all. Weeks after and almost fully recovered, but still not able to speak she decided to let me take the first photographs of her. I felt honored and I am excited to share her story with you.


From Maggie
I was born on August 9, 1989 with a disorder called Hemifacial Microsomia. I was also born without a left ear. Hemifacial Microsomia is a condition in which the lower half of one side of the face is underdeveloped and does not grow normally.The syndrome varies in severity, but always includes the maldevelopment of the ear and the mandible. I have undergone over a dozen surgeries since birth. What I was born with is not genetic and from the moment I was born my parents starting searching for the best doctors for me. We ended up at NYU medical center and have been there ever since.My team of doctors is lead by Dr. McCarthy; the team has been with me since day one. Dr. McCarthy performed every surgery on my jaw including my most recent surgery . Along with Dr. McCarthy I have some of the most incredible doctors work on me. What that have done for me is truly incredible.I had my ear reconstructed using rib cartilage by another great doctor; Dr. Thorn. I was unable to gain hearing in my left side from the ear canal but the ear itself is magnificant. Also I have had a fat implant by another doctor in my left cheek, due to the jaw disposition the cheek on the same side as the jaw (left side) is underdeveloped compared to the right side. There have been other minor surgeries and years of orthodontia but it has always been worth it.

When I was younger I didn't understand that I was different; or for that matter that anything was wrong with me. I can remember kids asking me questions about what was wrong with me and me dishing out elaborate stories that I made up in my head about what caused me to be 'different'. I soon began to understand that I was different for a reason and that nothing was really wrong with me; there was a purpose for me being born with this disorder. Children and adults for that matter can stare and say things about me all they want but I realized a long time ago that none of that mattered to me and I will not let it effect me. I enjoy telling people about what I have been through and educating them on my disorder, especially because no one really knows and understands any of it at first.

My most recent surgery was one of the biggest surgeries I have undergone. It was in simple terms a double jaw distraction involving moving the chin and implanting fat in my cheeks as well. I have had jaw distractions before but only on the left side ( that is my affected side) and with a device that your turned over the course of three months to straighten the jaw out. This surgery involved breaking both sides of my jaw and re-attaching the jaws in the proper place with a newly positioned more prominent chin. Once again the surgery was done by the same team of doctors and orthodontist. This surgery involved wiring my mouth shut during surgery, using plates attached to my braces which is something I have never had done before. The doctors used my ribs as bone in my chin and along my jaw line. Due to the massive amount of things done in this surgery the recovery is very long. However, I am now three months post-op and things are going great. While healing from surgery has been extremely difficult at times; and I had to learn how to do simple tasks like drinking and eating all over again everything gets easier each day. The entire recovery process will take about a year, and in a few months I will be having another surgery on my nose but I couldn't be more ecstatic about the outcome so far. To see the differences from the surgery date till now is truly amazing! Even though it has not always been easy I wouldn't change any of it; my life has been nothing but normal but I couldn't picture it any other way.



7 comments:

Robyn said...

WOW! Wow wow wow wow.

Man, I loved this.

What an amazing perspective. I LOVE that she had elaborate stories as a kid to explain things to other kids. That's fantastic. (I should teach that trick to my kids!!)

It's so crazy…but it seems like this wild ride she's been on has brought so much joy to her life. I love that. I really, really appreciate that, you know? Super inspiring.

She's also pretty hot stuff. Your brother is one lucky chap, Tabitha!

Tabitha and Larry said...

I know Robyn... she is hot stuff! And you're right. It is amazing what tough situations can do for people, including those around them. Life is something else!

Anonymous said...

What an amazing life story! She looks absolutely beautiful!
Debbie

Anonymous said...

She is most deafinatley the most amazing person I have ever had the privilage of knowing! Her positive outlook in all aspects of life are truly inspiring !!

thenarniaofyoutube said...

i find it amazing that despite her condition she's a pretty and attractive woman

Erica Lichter said...

What an inspirational young woman! My daughter was born with the same condition so I appreciate the personal story and pictures to accompany it. I love her strength and confidence, she is beautiful. I love that she made up stories to explain her looks, I hope my daughter can have that kind of positive attitude!

Anonymous said...

I am a 40 year old twin and I was born with Hemifacial Microsomia. I have had many surgeries and I had my face reconstructed when I was 14 years old. It has been a struggle to say the least. I just wanted to say...GREAT pictures and AWESOME surgeon! Good luck!