Treacher Collins syndrome affects roughly 1 in 50,000 newborns worldwide. The genetic condition happens when a gene mutates before birth, affecting how a baby’s face develops.
The severity of the condition varies with each child and can affect how their cheekbones, jaws, ears, and eyelids grow and develop. It can also cause problems with breathing, swallowing, chewing, hearing, and speech.
Now imagine learning all of that as a new parent who is eagerly awaiting that coveted first moment when you get to hold your baby. That was the reality for Magda and Russel Newman years ago when doctors whisked their son, Nathaniel, away immediately after he was born.
A Surprising Discovery
Magda recalls that terrifying moment one February night in New York City. All she wanted to do was hold her baby after being in labor for 17 hours. Instead, none of the doctors would tell her what was going on. Eventually, they pulled Russell aside and showed him a textbook.
“I saw just shock on people’s faces, big eyes, and I [asked], ‘What’s going on here? Who — what happened?’” Magda told ABC News. “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.”
“I think they were scared at first. Because he had no cheekbones and no upper or lower eyelids… just completely disfigured,” Russel added. “And I remember thinking, ‘That’s going to be my kid?’ It was surreal.”
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The parents didn’t know what to do, so they reached out to a leading hospital that worked with children who have Treacher Collins. A speech and language pathologist named Shelley Cohen called them back within hours and congratulated them on their new arrival.
“That was the first person who said to us, ‘Congratulations,’” Magda told the publication.
“And I remember going, ‘Are you freaking nuts?’” Russel added. “And she said, ‘Let me just tell you, your son is going to live a long, healthy, happy, wonderful life.’ And I believed her.”
A Long Medical Battle
Nathaniel spent the first month of his life in the neonatal intensive care unit at that hospital. One night, while Magda and Russel watched the Grammys from their room there, they found an unexpected beacon of hope. Christina Aguilera was singing “Beautiful,” and it really hit home.
“I swear she was singing to us that night, I swear, as cheesy as that sounds,” Russel said. “That song just resonated.”
“We decided he's going to be beautiful not because of his appearance but because of his personality,” Magda added. “He's going to be a beautiful person.”
The couple immediately went down to the NICU to see their son. “We held Nathaniel for the first time,” Russel explained. “And it was awesome. And then the journey started.”
Despite their newfound determination and outlook, the couple still had to adjust to life with a baby with Treacher Collins. Magda says she cried almost every day, and it took nearly a year for her to look at him without flinching. His brain was unaffected, but he had no cheekbones, eye sockets, or ears, and his jaw was underdeveloped. As a result, he couldn’t eat or hear. Worse, his nasal passageway was nearly solid bone, so he couldn’t breathe.
That first year, Nathaniel had 10 surgeries to improve the quality of his life.
A Rough Childhood
Nathaniel has had more than 70 surgeries throughout his life, all of which were meant to improve the way he lived. “We've never done cosmetic surgery on Nathaniel,” Russel said. “Everything we've done … his whole life has had some benefit to life function.”
That’s rough enough on any family, but at the same time, the couple wanted another child. After many consultations with medical professionals, they welcomed a second son, Jacob. Jacob and Nathaniel were close, but eventually, Nathaniel realized he was different. How? Another child called him a monster.
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“And then I realized that they don’t do it to anybody else, so I was different,” Nathaniel told the publication. “I was insulted… [kids] don’t really think about what they’re saying, and their parents don’t really do anything about it.”
By the time Nathaniel was in sixth grade, his father had gotten a new job, and the family moved to Reno. To prepare the class for Nathaniel’s first day, he wrote a letter to his classmates explaining his condition. The family also incorporated a photo of Nathaniel and the book Wonder.
Breaking Down Stigmas
R.J. Palacio published Wonder in 2012 after she encountered a little girl with severe facial differences. She was pushing her son in a stroller, and her son began to cry at the little girl. She immediately pushed the stroller away so the little girl wouldn’t feel bad, but then regretted doing that for the rest of the day.
“I just thought, ‘OK, I'm going to write a book and… it's going to be about what it must be like to face a world every day that doesn't know how to face you back,” she said.
When Nathaniel was eight years old, Wonder also became a successful film. According to the family, that movie changed their lives. Now, they find people are much more accepting and less ignorant.
“It changed everything. It spread a lot of light on facial differences. People became more understanding,” Nathaniel told People. “Now, in school, I’m treated like everyone else. People are really nice.”
“Growing up with a brother with TCS forced me to be mature,” Jacob added. “I had to protect Nathaniel when we were younger, before Wonder. I was his bodyguard. When kids started staring, I’d stand in front of him and just boil inside. I was the police officer for Nathaniel.”
Documenting Their Own Journey
The book was so impactful that in 2020, Magda and Nathaniel wrote a pair of companion books to take the conversation even further: NORMAL: A Mother and Her Beautiful Son and NORMAL: One Kid’s Extraordinary Journey.
“We wanted to dive deeper into explaining the physical challenges of being born with facial differences and how they impact more than your social interactions. I wanted to share how, as a mom, I overcame my own immense challenges to raise my children as “normal" as possible,” Magda told ABC News.
“One is targeted at young readers (teens), and the other, in my voice, is targeted at the adult reader,” she continued. “I had been thinking about writing our story for quite some time and became even more encouraged after the popularity and success of Wonder.”
A Happy Family
These days Nathaniel is living life to the fullest, having successfully undergone surgery to open up his nasal passage and remove his trach tube. Now, he can play sports, drive, and do other regular things that he wasn’t able to do in the past.
“Our message [is] live your normal! Don't let your life circumstances or how others perceive you determine how you choose to live your life. ‘Normal’ is how you choose to define it,” Magda said.
Nathaniel agrees. With all of the support from his family, he has managed to go through extreme surgeries, he has navigated really hard social situations, and he still finds strength and positivity in his life.
“I write in my book that, ‘I’m not normal, and neither are you,'” he adds to People. “And what I mean is that if we were all normal, we’d all have to be the same.”
Embracing Our Differences
If there’s one takeaway from Nathaniel’s story, it’s that our true beauty lies in our differences. So the next time you happen to find yourself judging someone else for being different than you, stop and appreciate those differences in all of their beauty.
It could look as simple as learning to compliment people based on their talents and traits rather than their looks. Or perhaps it’s recognizing that the way you do things isn’t the right way for everyone, and each person is unique.
At the end of the day, we can learn and grow from our diversity and differences, but only when we first learn to accept that and eliminate our own judgments and preconceived notions.
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