Nathaniel Newman and Jack

Patient Spotlight: Nathaniel

A decade! An entire decade has passed since Nathaniel joined us on February 7th, 2004. With no in utero diagnosis, Nathaniel’s birth was both a joyous moment and a moment of utter fear and panic. Born at a New York area hospital not quite equipped to handle what was later diagnosed as Treacher-Collins Syndrome, Mom & Dad quickly searched for answers to the myriad of questions racing through their heads. All roads, and answers, pointed to NYU Medical Center and The Institute for Reconstructive Plastic Surgery. Late that Saturday evening messages were left at IRPS and the family waited with baited breath for a return call.

nathaniel newman

As Nathaniel lay struggling for every breath and Mom and Dad lay crying in bed, the call that would forever change their lives came late in the evening. The fact that Shelley Cohen, Cleft Lip & Palate Coordinator at IRPS, was calling at 10 PM on a Saturday, was a portent of the amazing things to come. Within 24 hours Nathaniel was transferred across town to NYU Medical Center and landed in the care of the team of amazing doctors and nurses that have become a part of the Newman family these past 10 years.

Since that day 10 years ago Nathaniel has endured well over 40 surgical procedures. From the reconstruction of his jaw, the lifting of his eyes and the virtual recreation of a nasal passageway, Nathaniel has faced every challenge thrown his way. He sometimes calls himself a bionic boy: he has had pins sticking out of his jaw, a screw in his head to hold his hearing aid, a g-tube to get food pumped into his stomach and a tracheostomy to help breathe.

But, what is most amazing about Nathaniel is his utter refusal to let Treacher-Collins define who he is. Rarely seen without a smile, Nathaniel is a thriving 4th grader overcoming the stigma of facial differences with a sense of humor and goofiness that instantly wins over those taken aback by his less than typical appearance. He loves what all 4th grade boys love: video game and junk food. In spite of this love of all things junk, Nathaniel excels at school and particularly loves Science and Art.

Nathaniel has numerous surgeries ahead. As he continues to grow into a teenager and young man, the team at IRPS will do surgeries to ensure continued improvement of all the necessary life functions. While Mom & Dad worry, the fears are offset in their utter confidence that Nathaniel himself has the psycho-social tools needed to grow into an amazing young man who will change the world view of what “different” means.


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