Thursday, January 19, 2017

He has one of the world's rarest birth defects. Here's what the experience taught his mom.

The inspiring story of how a mother's love conquered people's fear.

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When Lacey Buchanan was 23 weeks pregnant, she was told that her baby would probably die.

After her 18-week ultrasound, doctors had noticed something was wrong. Most likely, they told her, it was a cleft palate. But as more time passed, they grew increasingly concerned.

And by the time she arrived at the hospital to deliver her baby, no one knew if he would live.

To everyone's surprise, though, her son was born and he survived.

But he was born with a condition so rare that it's one of only 50 recorded cases in the worldTessier cleft lip and palate, classifications 3, 4, and 5.

This condition, induced by amniotic band syndrome, caused her son's skull to fail to knit together in the womb, resulting in a large V-shaped cleft from his mouth into his eyes. As a result, Christian was born without eyes. He couldn't even close his mouth.

The team at Vanderbilt University Medical Center had never seen a case like it.

Image via Lacey Buchanan, used with permission.

Lacey and her husband, Chris, were overjoyed that their son was alive. But they were also completely overwhelmed. They couldn't take their newborn home right away, and he needed surgery when he was just four days old to close an exposed part of his head.

Then, before he turned three months old, Christian needed a second surgery.

For Lacey, this was extremely difficult.

Not only was she a new mom with a baby in and out of the hospital, but she was also a law student with a full-time job. It was hard to balance everything, and at one point, she said, she had a breakdown.

"I was thankful that Christian had lived, but there was a point when I started saying, 'Why me? Why my child? What have I done to deserve this?'" she recalls.

"Motherhood can make you feel so ill-equipped," she says. "It can make you feel like you're constantly failing. Am I doing enough? Am I screwing up this little tiny human?"

Image via Lacey Buchanan, used with permission.

Then, when the family started taking Christian out in public, she felt judged.

People would point and stare. They would even come up to Lacey and make rude, hurtful comments.

"What's wrong with him?" people would ask. And when Lacey posted a picture of her young son on Facebook, one woman even told her that she was selfish for not aborting him.

These comments really upset Lacey — they felt like personal attacks on her and her son. And they were from strangers.

But instead of giving up, Lacey decided to be proactive and stand up for herself and her child. So she made a video — with handwritten notecards — to explain what happened to him.

Soon, her inbox was flooding with calls, messages, and notes of encouragement. The world had seen Christian, and they wanted to let her know that they cared about him.

"I was shocked. Absolutely shocked," Buchanan says. As a mother, she felt validated. Suddenly, everything didn't seem quite so hard.

Five years later, Christian is a happy, active little boy. He takes karate lessons.

Image via Lacey Buchanan, used with permission.

He plays Christmas carols on the piano.

Image via Lacey Buchanan, used with permission.

He loves Superman.

Image via Lacey Buchanan, used with permission.

And though he can't see, he is still just a normal little boy who likes playing outside in the fall leaves.

As for his mother, Lacey, she's fulfilled her childhood dreams of becoming a lawyer.  

Image via Lacey Buchanan, used with permission.

And she's planning to use her new law degree to help mothers who are struggling to navigate the complex bureaucracy of disability law, like she once did.

To someone unfamiliar with how the law works, the red tape can be overwhelming, she says. "I wouldn't have even known this world existed if it hadn't been for Christian."

She also decided to write a book about her family that hits bookshelves Jan. 10, 2017.

Being a parent is one of the hardest jobs there is, and all parents, at one point or another, doubt themselves.

Though it was scary for Lacey to balance work and school with being a mom to Christian, she succeeded. Having him was a gift in a different kind of wrapping paper, she says.

And it taught her to be a better mom and to be a better human.

And the biggest lesson she learned is also the biggest piece of advice she has for other mothers: "You are enough. If you weren't enough, you wouldn't have had this child."

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