I dont remember fainting, but i certainly remember screaming. He was screaming so loud that i thought he was dead. Reporter what was the doctor telling you. Tell me what you saw. And they didnt want to show it to me. Reporter they didnt wanna show you your own baby . What happened, whats happening . We decided like hes going to be beautiful. And then we got up out of the bed, and we went down to the nicu and we held nathaniel. For the first time. We held our son. And it was awesome. My name is Nathaniel Newman and i am 12 years old. I am different. He kept asking me, why is everybody staring at me . Reporter im curious when you realized, hey, my face is different from other peoples faces. When the first kid called, monster. Reporter a kid called you a monster . Yeah. Here comes superhero nathaniel sometimes when im having a good time i forget what i look like. Reporter Newman Family, i have someone that i want you to meet. Tonight, a Remarkable Television event. The bestselling book, the blockbuster movie, and now on 20 20, Elizabeth Vargas with the the reallife story of amazement and wonder. Reporter it is nearly midnight on a frigid february friday in manhattan. Nurses on the labor and delivery ward at Saint Lukes Hospital are urging one of the expectant mothers to keep trying. Magda newman with her husband russel has been in labor for hours the endless waiting nearly as agonizing as the physical pain. What was the doctor telling you about why the labor was taking so long . Well, its the first delivery, you know. You just gotta push harder. They finally come in and say, look, we gotta get this kid out. Hes showing some signs of distress. And then, our life changed forever. Reporter tell me what you saw. It didnt look like a human being. Reporter it didnt look like a human he didnt look like a person. It was that different. Reporter a crushing blow to a dream of parenthood, which itself had just been born three years earlier. When magda and Russel Newman met during a walk on the beach. I was bartending in the hamptons. And i saw her walkin on the beach. And i asked one of the waitresses who that was. And theyre like, thats the nanny. 22yearold magda was a classically trained pianist originally from poland. She had taken a summer job in the u. S. As an au pair. 33yearold russel saw an opportunity and seized it. I i was a pretty rudderless ship in my early 30s. And she just grounded me right away. My life skyrocketed after i met her. Reporter the two married in 2002 and immediately got down to business. Family business. So, you got pregnant. Were you excited . Oh, yeah. Yeah. Very excited. Reporter everything was healthy . Absolutely no blips on the radar screen. Magda was 24 years old, incredibly healthy. So, they dont do a lot of tests when youre in that group. She was the ultimate lowrisk pregnancy. Reporter but back in that hospital room, after nearly 17 hours of labor when magda finally delivers, it is not a scene of happiness but of horror. I dont remember fainting. But i i certainly remember screaming you he was screaming so loud that i thought he was oh, my god. Oh, my god. What dead. Thats what i thought. What happened . Whats happened . Whats happening . I saw just shock on peoples faces, big eyes and l whats going on here . Who what what happened . And i see they put him in a little back room. Theres 20 people running in there, doing something. I dont hear baby crying. No noise reporter and nobodys telling you anything . Silence. Nobodys no. Telling me anything. Im like, whats going on . Is he alive . Whats going on . I wanna see the baby. And they didnt wanna show it to me. Reporter they didnt wanna they were scared to show me. Reporter show you your own baby. I i think they were scared at first. Because he had no cheekbones and no upper or lower eyelids. Just completely disfigured. Reporter and even more terrifying, the baby is not breathing. Magda is left alone on the delivery table while doctors frantically work to save her babys life. While that was going on, a doctor called me out of the room to show me a textbook written in, like, the 1960s. It i just remember it being an old, blackandwhite picture of a teenager with treachercollins. And i remember thinking, thats gonna be my kid . Reporter Treacher Collins is an extremely rare congenital cranial facial disorder. It affects just one in 50,000 people. I cant imagine firsttime parents. You were so excited to have a baby. In one nanosecond, everything, every single thing changed oh, it was it was it was it was surreal reporter they name their child nathaniel and contact the institute of reconstructive Plastic Surgery at nyus medical center. Leading hospital working with children who have Treacher Collins. They leave a message and within hours receive a fateful phone call back. I said hello, whos this . She goes, its shelley cohen. Congratulations. That was the first person who said to us, congratulations no one had congratulated us yet. It was, like, 10 00 or 11 00 had a baby. Nobody even said, yay. You have a baby. Like, hes and this woman shelley, before i could even tell her, she goes, hey, mr. Newman, you had a baby boy, i heard. Thats wonderful. And i remember goin, are you freakin nuts . Reporter do you remember that conversation . I do because i said congratulations before we talked about anything else. Reporter you were the first person. People were paralyzed. They didnt have an idea of what to do. And she said, lemme just tell you, your son is gonna live a long, healthy, happy, wonderful life. And i believed her. Like, it was just this voice on a phone. And i believed her. Reporter nathaniel is transferred to the Neonatal Intensive Care Unit at nyu where he will spend the first month of his life. The newmans meet nurse pat chibaro. An angel in a white lab coat. What do you remember most about that day that you met the newmans . They were absolutely devastated. Fa will say, well, when is the surgery . When is the surgery thats going to make this all reporter all better. All go away. Reporter right. And unfortunately, its a journey. Its not a surgery. Reporter and for the newmans the journey was just beginning. They say it was something unexpected that happened in the hours after nathaniel was born, that sustained them through the early days, and then later months and years ahead. We turn on the tv, and it was the grammy awards. The show starts with Christina Aguilera singing the song beautiful. I am beautiful no matter what they say no matter what words cant bring me down no i mean you talk about time and no matter what people say, no matter what people do, youre beautiful in every single way. We decided, like, hes going to be beautiful not because of his appearance because of his personality, cause hes going to be a beautiful person. We are beautiful in every single way i swear she was singing to us that night, i swear, as cheesy as that sounds. And that song just resonated. And we got up outta the bed. And we went down to the nicu. And we held nathaniel for the first time. We held our son. Sorry. And it was awesome. And then the journey started. Reporter now meet this extraordinary wonder boy, next. Where is it you wanna go . Where is it you wanna go . Check it out oh, dude. Im sending it to him. Where is it you wanna go . Where is it you wanna go . Where is it you wanna go . Where is it you wanna go . Thank you. Where is it you wanna go . Where is it you wanna go . Hey hey. Whatcha doin on your computer . Whats a computer . And it might be hard what ito handle ve got but like the flame that burns the candle the candle feeds the flame topped steak twisted potatoes at applebees. Eatin good in the neighborhood. Were on a mission to show drip coffee drinkers, its time to wake up to keurig. Wakey wakey rise and shine oh my gosh how are you . Well watch this. I pop that in there. Press brew. Thats it. So rich. I love it. Thats why you should be a keurig man fullbodied. Are you sure youre describing the coffee and not me . This beneful grain free is so healthy. Fullbodied. Oh farmraised chicken thats good chicken hm . Here come the accents. Blueberries and pumpkin. Wow. And spinach that was my favorite bite so far. avo beneful grain free. Out with the grain, in with the farmraised chicken. Healthful. Flavorful. Beneful. Here comes the man, here comes the man, here comes the man, here comes the man, here comes the man, here comes the man, make sure theres bows lets go whoo preseeeeeents reload but we didnt get you anything. woman whoa, whoa, whoa. You do realize everyone wins . Presents for them, kohls cash for you announcer kohls. Give joy. Get joy. Tim and charlie, 4th graders. Spoiled 3rd graders, they get star wars on their gogurt tubes. Even their soccer balls are fancy. New star wars gogurt. Kids never had it so easy. Star wars the last jedi in theaters december 15. This film is not yet rated. Announcer once again Elizabeth Vargas. Reporter every parent of every child in every hospital clings to one sustaining hope, that whatevers wrong can somehow be fixed. But Nathaniel Newmans devastated parents dont 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 its my child. I couldnt 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 its 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, its his brain is unaffected thats really important. Its 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. Weve never done cosmetic surgery on nathaniel. Everything weve 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, hes 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, youre worrying about, 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. Were walking with the stroller. And everybody was, oh, you have a baby. And they go, let me see the baby. And theyre 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 Treacher Collins, there is a 5050 chance their second child will have it as well. Reporter we did every test known to man. And they basically came back and said, were 99 sure your second child will not be affected by treachercollins. 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 dont look like everybody else. Definitely around age four or five, he could clearly vocalize, i dont like the staring. I dont like the name calling. At that age were 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 yearsold and has had 53 surgeries. Reporter i bring my son sam along, who, like so many kids, has never met anyone like nathaniel. Weve come to do some of nathaniels 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 treachercollins, 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. Im curious when you realized, hey, my face is different from other peoples 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 dont do it to anybody else, so i was different. How did that make you feel . I was insulted. Yeah, ill 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 theyre they dont really think about what theyre saying, and their parents dont really do anything about it. Reporter and over the years nathaniels 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 youd 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 dont stare. Do you think of yourself as your brothers 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 . Almostnine nine. Youre almost nine . Here comes super hero nathaniel sometimes i forget i have treachercollins. You do . Yeah, sometimes if im having a good time, i forget what i look like. So when we were zip lining did you forget you had treachercollins . Yeah, i was just having a lot of fun. Reporter coming up for nathaniel middle school. How do you fit in when you are born to stand out. Reporter my name is Nathaniel Newman and i am different. Stay with us. im 65 and healthy. Im not at risk. Even healthy adults 65 and older are at increased risk of pneumococcal pneumonia. Isnt it like a bad cold or flu . Pneumococcal pneumonia is a potentially serious bacterial lung disease. In some cases, part of your lung may fill with mucus, making it hard to breathe. Can i catch it from a pneumococcal vaccination . No. The vaccines do not contain live bacteria. Talk to your doctor or pharmacist about how to help protect yourself. We create machines that make every experience more intense and real. With intel core processors and geforce gtx graphics so powerful they can redefine reality. Because the best feature of a Gaming Machine is the power to make you forget its there. shop our lowest prices ever at dell. Com. hard exhalation honey . Can we do this tomorrow . grunts of effort can we do this tomorrow . 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Absolutely ageless® from aveeno®. Reporter the first day of middle school, who ever wants to relive that, but imagine what its like for Nathaniel Newman. In the fall of 2015 nathaniel walked into bd Billinghurst Middle School in reno, nevada for his first day of sixth grade. Which for nathaniel meant another brutal round of introductions. New school, new classmates. To ease the transition, the newmans had a plan. Russell came up with the great idea. They sat down together and we write a letter. My name is Nathaniel Newman and i am 12 yearsold. I am different. I dont want you to be surprised when we meet. I i have a trach to breathe and a special hearing aid to hear. I have three dogs. I like pokemon a lot, as well as star wars. I really just want you to treat me like everyone else. And we include a picture to try and avoid some of the first day shock and awe if you will. Reporter after a couple of months we came to visit nathaniel at school. Ms. Culbertson and ms. Urban are his 6th grade teachers. How important were those letters that nathaniels family sent out . The students knowing what to expect i think is very helpful, rather than just walking into school and then having that reaction, which most parents have taught their kids not to have that kinda reaction. But its hard. Theyre kids. Were any of guys at all nervous to meet nathaniel the first time . Yeah. Yeah, its okay to admit that. Tell me why you were nervous. I was a little nervous because i didnt wanna say anythin