Tonight, ABC News’ 20/20 will air their story about one family’s struggle to navigate life with a child with Treacher Collins syndrome.
Nathaniel Newman was diagnosed with a rare cranio-facial condition, Treacher Collins syndrome, at birth. Tonight’s special edition of 20/20 will include interviews with Nathaniel, his parents, and Nathaniel’s doctors, as they face the challenges that come with the 13-year-old’s condition. The segment will also interview 33-year-old Jono Lanaster who also has Treacher Collins, as well as pop sensation Christina Aguilera.
Read on to learn more about Nathaniel.
1. He Was Born with a Severe Case of Treacher Collins
Nathaniel was born with a severe case of Treacher Collins, a rare genetic condition characterized by deformities in the ears, eyes, cheekbones, and chin. It affects just 1 in 50,000 people worldwide.
Magda was 24 at the time of Nathaniel’s birth, and was in labor for 17 hours. Nathaniel’s parents, Russ and Magda, had no warning from the doctors that anything was wrong with their baby before he was born– nothing showed up in their Magda’s pre-natal scans.
She tells ABC News, “I saw just shock on people’s faces, big eyes, and I [asked], ‘What’s going on here? Who—what happened?’… And I see them put him [her son] in a little back room. There’s 20 people running in there, doing something. I don’t hear [the] baby crying.” Magda tells the news outlet that the room was quiet; at first, she thought her baby was dead. “I’m like, ‘What’s going on? Is he alive? What’s going on? I want to see the baby… And they didn’t want to show it to me.”
That night, as they struggled to come to terms with the news, the couple sat in the hospital room and watched the Grammy Awards. After watching Christina Aguilera perform her song “Beautiful”, Magda and Russ made a decision to “resolve to treasure the inner beauty in their son and help the world see it, too.” Russel tells ABC of Aguilera, “I swear she was singing to us that night, I swear, as cheesy as that sounds. That song just resonated.”
2. He Is 13 Today
Today, Nathaniel is 13.
During the first ten years of his life, he went through 10 surgeries to “try and improve the quality of life.” None of the surgeries were cosmetic. Russel tells ABC, “We’ve never done cosmetic surgery on Nathaniel. Everything we’ve done … his whole life has had some benefit to life function.”
Despite his differences, Nathaniel tells ABC he “kind of” likes being different. Speaking to Elizabeth Vargas, Nathaniel says, “I kind of like it… It just seems fun because I stand out. Sometimes if I’m having a good time, I forget what I look like.”
3. Elizabeth Vargas Followed Nathaniel and His Family for 3 Years for Their News Piece
For nearly three years, Elizabeth Vargas followed Nathaniel and his family to understand how they navigate life with Treacher Collins syndrome.
Vargas explains that she and her crew went along with Nathaniel to his first day of middle school, when he met another man with the rare condition, and when the Newmans’ decided to proceed with a risky but groundbreaking surgery that would allow Nathaniel to live without a trach tube.
In an article for ABC,Vargas explains, “Shadowing a family like this for as long as we did with our cameras is a delicate thing. We assigned one of our best producer/shooters for this, Jeff Schneider. After the first few hours of recording, he was able to make the Newmans so comfortable, they could almost forget he was there. We captured some truly intimate moments with this family – the worry about how other kids would treat their son, the anguish as they carried him into the operating room for yet another surgery. My producers, Sean Dooley and Jen Joseph, and I all became very close to the Newmans. They are remarkably candid about their most difficult moments, about their worries and their fears. I interviewed them almost half a dozen times over the two years.”
4. Nathaniel Underwent Groundbreaking Surgery That Had Only Been Performed Once on a Child with Treacher Collins
When he was 12, Nathaniel underwent a groundbreaking surgery that had only been performed once on a child with Treacher Collins. According to Broadway World, the goal of the surgery was to remove his life-altering tracheostomy.
Dr. Richard Hopper, the chief of surgery at the hospital’s cranio-facial center, performed the surgery. Hopper told ABC News that prior to the operation, he said to Nathaniel, “It’s not giving you a new face… I think you should be very happy with your face and we don’t want to take that away from you but it puts your face into a different position.”
The surgery lasted twelve hours, and involved doctors separating Nathaniel’s skull from his face to reposition the bones. When he woke up, Nathaniel’s face was wired shut– he could not eat or sleep. The aftermath of the procedure involved adjusting tiny turning devices on his face three times a day. The process was grueling, but today, Nathaniel is able to live without a trach.
5. His Parents Compare Him to Auggie Pullman to Help Other Children Understand His Condition
In 2015, when Nathaniel set off for middle school in Nevada, his parents helped him write a letter to his classmates so they could better understand Nathaniel’s condition. In the letter, Nathaniel told classmates he had three dogs, and enjoyed Pokemon and Star Wars.
The letter also likened Nathaniel to Auggie Pullman in the book ‘Wonder’. “We incorporate the book ‘Wonder’ into the welcome letters,” Russel tells ABC. “Like, ‘Hey, you might have read ‘Wonder’ now. Well, I’m a kid just like Auggie Pullman.”
The book ‘Wonder’ was published in 2012, and has sold more than 5 million copies. It has since been adapted into a movie starring Jacob Tremblay, Julia Roberts, and Owen Wilson. Check out the trailer below.