Parents recall night son was born with rare craniofacial disorder: Part 1

After hours of labor, Magda Newman and her husband Russel's son Nathaniel was born with Treacher Collins syndrome.
3:00 | 11/18/17

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Transcript for Parents recall night son was born with rare craniofacial disorder: Part 1
Reporter: It is nearly midnight on a frigid February Friday in Manhattan. Nurses on the labor and delivery ward at saint Luke's 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, it's the first delivery, you know. You just gotta push harder. They finally come in and say, "Look, we gotta get this kid out. He's showing some signs of distress." And then, our life changed forever. Reporter: Tell me what you saw. It didn't look like a human being. Reporter: It didn't look like a human -- He didn't 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 they're like, "That's the nanny." 22-year-old Magda was a classically trained pianist originally from Poland. She had taken a summer job in the U.S. As an au pair. 33-year-old 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 don't do a lot of tests when you're in that group. She was the ultimate low-risk 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 don't 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. That's what I thought. "-- What happened? What's happened? What's happening?" I saw just shock on people's faces, big eyes and L -- "What's going on here? Who -- what -- what happened?" And I see they put him in a little back room. There's 20 people running in there, doing something. I don't hear baby crying. No noise -- Reporter: And nobody's telling you anything? -- Silence. Nobody's -- No. -- Telling me anything. I'm like, "What's going on? Is he alive? What's going on? I wanna see the baby." And they didn't wanna show it to me. Reporter: They didn't 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 baby's 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, black-and-white picture of a teenager with treacher-collins. And I remember thinking, "That's gonna be my kid?" Reporter: Treacher Collins is an extremely rare congenital cranial facial disorder. It affects just one in 50,000 people. I can't imagine first-time 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 nyu's medical center. Leading hospital working with children who have teacher Collins. They leave a message and within hours receive a fateful phone call back. I said hello, who's this?" She goes, "It's 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, he's --" -- And this woman Shelley, before I could even tell her, she goes, "Hey, Mr. Newman, you had a baby boy, I heard. That's wonderful." And I remember', "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 didn't 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 Newman's meet nurse pat chibaro. An angel in a white lab coat. What do you remember most about that day that you met the Newman's? They were absolutely devastated. Families will say, "Well, when is the surgery? When is the surgery that's going to make this all -- Reporter: All better. -- All go away." Reporter: Right. And unfortunately, it's a urney. It's not a surgery. Reporter: And for the Newman's 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 can't bring me down ??? ??? no ??? I mean you talk about time and "No matter what people say, no matter what people do, you're beautiful in every single way." ??? We decided, like, he's going to be beautiful not because of his appearance because of his personality, 'cause he's 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.

This transcript has been automatically generated and may not be 100% accurate.

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