Treacher-Collins syndrome 2

She labored for nearly 17 hours before giving birth to her son.

You would expect her and her husband, Russel, to be overwhelmed with the joy of bringing a new life into the world?

It might be the best moment of their life, but at the same time, also the worst.

As her husband, Russel Newman, took a closer look at the baby, he screamed, “OMG! What happened? What's happening?” Chaos and alarms ensued as nurses took the baby away into the back room without letting Magda take a look.

That day, Magda Newman was left on the delivery table, because the doctors and nurses were working hard to save the baby's life.

The baby wasn't breathing or crying. The baby didn't look like any other babies. He didn't have ears, cheekbones, upper or lower eyelids or eyesockets. The only parts recognizable were a small jaw line and eyes that severely slanted downwards.

It was hours before the doctor reached a diagnosis which made Russel break down in tears. The baby was born with Treacher Collins Syndrome, a rare congenital craniofacial disorder caused by mutations in the POLR1C gene. It happens to 1 out of 50,000 newborn babies.

The Newmans' baby, named Nathaniel, was immediately transferred to the neonatal ICU at NYU Langone, where he lived for the entire first month of his life. It was in the ICU where Russel held the baby for the first time.

It took Russel and Magda a year before they could look at their son without flinching and acknowledge that this really happened to their own son.

But the appearance wasn't the worst part. It was functioning. Eating and hearing were almost impossible for Nathaniel. The doctors had a hard time trying to make him breathe. His nasal passageway was nearly solid bone, and his airway was very narrow.

The only comforting part was that Nathaniel's brain was unaffected.

Within the first year, Nathaniel underwent at least 10 surgeries in order to live. The first few surgical attempts to open his nasal passageway weren't successful. Then the doctors tried an emergency tracheotomy, which was a procedure to put an incision in the trachea creating a direct airway. Eventually, Nathaniel could finally breathe through a trach.

It was impossible to take Nathaniel out for a stroll, because they were living in New York City. As soon as others saw them with a stroller, they would take a look at the baby. While in other circumstances they would say, “Oh, he's so cute!” But in their case, they were horrified by what they saw.

Things were just as hard for Nathaniel.

He became aware of his looks at around 5 years old. Every time he went to a birthday party, kids would immediately run away, screaming in terror. He realized it was about him. Other kids would call him “monster” and insult him. Kids don't think twice before saying anything, and sometimes that could be very hurtful.

By the time he turned 11, Nathaniel had been through 54 surgeries, including a radical surgery which had only been performed once in history, a surgery that involved literally rearranging the bones in his face, and several surgeries that lasted longer than 10 hours.

One time after a 12-hour surgery of separating his skull from his face and moving it into the correct position, Nathaniel was left with a metal halo that had to remain attached to his head for three months and a wired jaw to shut the halo. Attached to the halo were tiny turning devices that need to be screwed three times a day.

It was never easy for a kid to lie on a metal table, surrounded by tools that were going to cut him open. But Nathaniel pulled through anyway. He had tackled more life-altering challenges than many old people on earth.

In 2012, a book titled Wonder was published, making Treacher Collins Syndrome better known to the world. The book was about an inspiring story of a 5th grade boy August (Auggie) Pullman, who was born with Treacher Collins Syndrome.

In 2015, the family moved to the West Coast and Nathaniel enrolled in a local middle school. His parents feared that he would be bullied and threatened because of his condition. To help his classmates understand his condition, Nathaniel wrote a letter before the first day of school.

This is Nathaniel with Jacob.

Hey,

How is your summer going? I want to take a second and introduce myself. My name is Nathaniel Newman and I am moving to Reno from Short Hills, New Jersey. I’m going to be a 5th grader.

My parents and I think it would be a good idea if I tell you a little about myself before you meet me for the first time. We think that might make it easier for us all to become friends. Why you ask? Well, I’m different than most kids you may have met before.

I know, I know… All Kids are different. But, I think you will agree I am a little different than most. I was born with a rare genetic birth defect called Treacher-Collins Syndrome (TCS). TCS causes a crazy thing to happen when you are growing in your momma’s belly. The bones and stuff in your face don’t grow properly. Then, when you are born, you look very different than most kids. Not only do you look different, it’s hard for you to do things most kids do pretty easily. I had a hard time eating, breathing and hearing when I was a baby. The good news though, thanks to some wicked awesome doctors I can eat, hear and breathe pretty well. But, I still look different and I don’t want you to be nervous when you meet me.

A few more details would help. I have had 54 surgeries in 10 years. You read that right. 54 surgeries. Many to reconstruct the bones in my face. NOT FUN AT ALL! Some to build new airways to breathe through. Some to build me a bone attached hearing aid. Too many to talk about. Surgery is NOT fun. But, the cool part is that I have been to some of the coolest cities in the world for my operations. NYC, Boston and Cincinnati just to name a few. Now, I still breathe with a tracheotomy which is a tube in your neck. Don’t be grossed out. It doesn’t bother me just try not to touch it. I also have a hearing aid in my skull. It’s cool cause I hear everything but dad worries cause if it gets wet or damaged it is MUCHO expensive.

Now the fun part. Other than all the stuff I just wrote I AM TOTALLY NORMAL!!! I am seriously smart… I love PIZZA and Meatballs and Spaghetti. I have a brother Jacob he is 8. (Totally annoying!!!) My dogs Smokey and Coco are totally BOSS! And of course I love my Mom & Dad. I have cool friends all over the country. And my absolute favorite fun thing… WAIT FOR IT… WAIT FOR IT!! MINECRAFT! I love MINECRAFT. Other video games too but especially MINECRAFT. Maybe we can play sometime if you like it as well. I also draw seriously funny cartoons.

Last thing… Kids like me sometimes have a hard time at new schools. Because I look so different kids stare and say mean things sometimes. If you wouldn’t mind, please don’t do that. It makes me sad and I’d much rather have fun with you than be sad. THANKS. If you want, you can read this awesome book called WONDER. My friend RJ Pallacio wrote it. It’s about a kid like me named Auggie when he goes to a new school. RJ calls me her real life Auggie. Check it out, I know you will like it.

If your Mom or Dad has any questions, tell them to shoot my dad an email.

Thanks. Always Choose to Be Kind.

Nathaniel

In 2016, after a series of groundbreaking surgeries, Nathaniel's trach was removed. He was capable of breathing through an unobstructed airway for the first time in his life.

Additionally, the book Wonder was made into a movie, starring Jacob Tremblay, Julia Roberts, and Owen Wilson.

Canadian actor Jacob Tremblay played Auggie. It is said that the makeup takes more than two hours to put on. No wonder it looks so real.

Currently, Nathaniel is living a normal life as a 15-year-old high school student. He has become accustomed to his condition and grown to sort of like it, as it makes him stand out from the crowd.

This is a picture of the family on the movie “Wonder” premiere — Russel, Magda, Nathaniel, and his younger brother Jacob.

They are working on a book called Normal: One Kid's Extraordinary Journey, which will be published next year.

https://www.quora.com/search?q=treacher-collins    

All my children
Posted by
Palwasha 5y
Treacher-Collins Syndrome.
Alex C. Lee
Updated 5y
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