Transcript for Boy living with Treacher Collins has 53 surgeries by age 11: Part 2
Announcer: Once again Elizabeth vargas. Reporter: Every parent of every child in every hospital clings to one sustaining hope, that whatever's wrong can somehow be fixed. But Nathaniel Newman's devastated parents don't even have that. How long did it take each of you to not flinch, each time you saw Nathaniel. It took me a year. A year? A year. A year. I almost cried every day. Every single time I looked at him, I could not believe it's my child. I couldn't believe it. Reporter: Nathaniel has a genetic condition called treacher Collins syndrome, unlike a typical infants' face he was born without cheekbones, eye sockets or ears but most harrowing of all are his breathing complications. His nasal passageway is nearly solid bone and his airway is so narrow it's like trying to breath through a soda straw. Reporter: But as different as Nathaniel looks on the outside, that is where the differences end. Did you tell them, "It's -- his brain is unaffected --" That's really important. It's really important. Because when you look at children with craniofacial conditions, you think cognitively, they are not going to be developmentally Normal -- Other than his appearance and how his life functions, breathing, eating, et cetera, he is no different than any other boy. Reporter: But because of those malformations in his face in his first year of life he has more than ten surgeries. We've never done cosmetic surgery on Nathaniel. Everything we've done his whole life has had some benefit to life function. Reporter: When Nathaniel is one month old an emergency tracheotomy is performed, a breathing tube inserted in his throat. A procedure as life altering as it is life saving. Once you become dependent on a trach -- Your life will S -- S -- Your -- your life changes. And then, he's gonna be prone to infection, which ended up proving to be true. Where a Normal parent, you know, bath time is this cute, wonderful experience. For us, you're worrying Abt, "What if water gets in there." Reporter: But they remain committed to that pledge they made to Nathaniel on the first night of his life, to raise him as a quote Normal boy and take him out into the world. I live in New York City. We're walking with the stroller. And everybody was, "Oh, you have a baby." And they go, "Let me see the baby." And they're like, "God bless you." That was the worst. That was the worst. Reporter: By the time Nathaniel turns two, russel and Magda are settling into this version of parenthood, yet they still long for the chance to experience it without all the heartache. I wanted to have a Normal child. I wanted to see how -- Be able to nurse -- Easy it is. A baby -- Definitely for sure. But we were scared to just do it on our own --@ Reporter: Because of the hereditary nature of teacher Collins, there is a 50-50 chance their second child will have it as well. Reporter: We did every test known to man. And they basically came back and said, "We're 99% sure your second child will not be affected by treacher-collins." But there is no way to know for sure until delivery day finally arrives. This delivery was so quick. I walk into the hospital. Twenty minutes later Jacob was born. Jacob literally came out looking like a porcelain doll. He was just gorgeous, beautiful. Reporter: The simple joys of motherhood, so easily taken for granted were for Magda, extraordinary. It was just so easy. This is so easy. You just have the baby and you just hold it and try to breast feed it. Reporter: Throughout the years Nathaniel and Jacob shared all the moments and memories that brothers do, but for Nathaniel, things were always different. How old was Nathaniel when he first noticed, looking in a mirror, "I don't look like everybody else." Definitely around age four or five, he could clearly vocalize, "I don't like the staring. I don't like the name calling." At that age we're Goin' to birthday parties and other kids see him and scream and leave. He knows it was about him. Reporter: I traveled to Reno, Nevada, where the family now lives, after Russ got a new job. It is finally time to meet Nathaniel. Hello. Nice to see you again. And this is Nathaniel. Nathaniel is now 11 years-old and has had 53 surgeries. Reporter: I bring my son Sam along, who, like so many kids, has never met anyone like Nathaniel. We've come to do some of Nathaniel's favorite things -- video games. Going to the trampoline park. Dodge ball! How do you explain how you look different? I just explain that I have treacher-collins, I know everyone looks different, except I look a lot more different than everyone else. Does that bother you? No. I kinda like it. It just seems fun 'cause I stand out. I'm curious when you realized, "Hey, my face is different from other people's faces." When the first kid called, "Monster." A kid called you a monster? Yeah -- That must have hurt your feelings? Yeah, and then I realized that they don't do it to anybody else, so I was different. How did that make you feel? I was insulted. Yeah, I'll bet. Were you mad? Yeah, I guess a little. Sometimes -- Why do you think kids do that? Why do you think they say mean things to kids who look different? Because they're -- they don't really think about what they're saying, and their parents don't really do anything about it. Reporter: And over the years Nathaniel's differences have affected his little brother Jacob too, he can sometimes find himself acting more like a big brother. Your parents were telling me how when you were so little and kids would be mean to Nathaniel and you'd get up there with your little fist and go, "Hey, leave my brother alone." I still do that. You -- you still do that -- But I get more into it. Please don't stare. Do you think of yourself as your brother's protector? I think he can protect himself pretty good, but sometimes there are just big high school kids that I have to talk to by myself -- How old are you, Jacob? Almost-nine -- nine. You're almost nine? Here comes super hero Nathaniel! Sometimes I forget I have treacher-collins. You do? Yeah, sometimes if I'm having a good time, I forget what I look like. So when we were zip lining did you forget you had treacher-collins? Yeah, I was just having a lot of fun. Reporter: Coming up for
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