May 12, 2012
Lacey Buchanan never dreamed that a Youtube video she created about her blind baby boy and his rare cleft palate condition would spread virally, racking up some 7 million views and delivering hundreds of personal messages of support to her Facebook and email inboxes.
In the seven-minute video, which she made using her iPhone, the 25-year-old mother from Woodbury, Tenn., describes the triumph of witnessing 14-month-old Christian’s giggles in the face of the constant stares and whispers they encounter in public when strangers see her baby.
He was born with an an extremely rare condition called Tessier cleft, which means that he was unable to fully close his mouth, and that his eyes are also clefted such that they never even formed.
Buchanan, who works at a day care center and also attends the Nashville School of Law, said she made the video about their struggle because she wanted her son “to grow up knowing he’s important, knowing he has value, despite the way that he looks,” Buchanan said. ”I never thought it would be as big as it has gotten, but I’m thrilled that Christian is becoming a face and a voice for this, that beauty is so much deeper than what you look like,” she said.
Her own video was inspiredby a film made by a woman named Lizzie, who tells the story of how her disfigured face, caused by a rare, unnamed medical condition, led classmates to call her “the world’s ugliest woman.”
In the video, Buchanan faces the camera while holding Christian to her chest without revealing his face, the boy’s tousled blond hair the same shade as hers. Her expressive face turns from beaming to tearful as she wordlessly holds up signs and photos to the camera, describing how thrilled she and her husband were to learn of her pregnancy, the difficult news that their unborn son would have a cleft palate, and their joy that he was born alive, since doctors worried that his internal organs wouldn’t be fully formed and that he wouldn’t be able to breathe properly on his own.
But the road ahead was hard. While Christian’s internal organs were completely normal, he was born without eyes, and underwent surgery on his cleft palate when he was just four days old, spending four weeks recovering in the neonatal intensive care unit at Vanderbilt University Medical Center. It took the hospital two months just to give his rare condition a name, Buchanan said, and the couple discovered that only about 50 other people in the world had the same diagnosis of Tessier cleft.
Buchanan and her husband had no idea how to care for a blind baby — and in particular, they weren’t prepared for how people would stare at him. ”The first time I went to the grocery store, I didn’t expect to leave crying because people were whispering behind my back,” she said. “It was something I had to try to get used to.” Children would ask their mothers “what was wrong with ‘that baby,’” and one acquaintance even cruelly messaged Buchanan on Facebook to tell her she was a “horrible person” for not aborting Christian.
Despite the negative attention, the Buchanans received ample support from friends and family, and from their local Baptist church, which has held multiple fundraisers for Christian’s medical care and constantly checks in with the couple to inquire how their son is doing.
And, as Buchanan describes in her video, Christian grew into a happy baby who, in the face of strangers’ comments, “would start giggling … and they would giggle, too,” which eventually spurred an outpouring of messages to her family on Facebook, and well-wishes in public from people who recognized them after hearing about their story.
Only at the end of the video does she turn Christian around to reveal his face to the camera, and she lovingly kisses his cheek while he sucks on a pacifier (which he is now able to do because of surgeries on his cleft palate).
She posted the video two months ago, and it has since generated nearly 7 million views and 1.8 million Facebook “likes” after an inspired fan reposted it on the Christian video site GodVine.
Because of the attention, Buchanan has connected with three other people who have Tessier cleft — two adults and the parent of another — and she said the support has been life changing. ”I try to make the best decisions I can for Christian, especially medically, and sometimes I’m put into corners, where whichever decision I make is going to impact Christian’s life,” she said. “Being able to reach out to someone who has lived there [with his condition], it takes a huge burden off me.”
Since making the video, she’s also created a Facebook page for Christian, and receives so many messages of support that she now turns off her iPhone notifications at night so she’s able to sleep.
Buchanan knows Christian faces a much more difficult road ahead of him than a baby born without his condition, but she’s thrilled her video has inspired so many people. ”When Christian’s old enough, let’s ask him if he’s glad I let him live,” she said. “His laugh is so valuable, at 14 months old, and is making more of a difference than most people ever do.”