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Mother wants others to know common birth defect is nothing to fear

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KANSAS CITY, Mo. -- It can be shocking for expectant parents to find out their baby will have a birth defect. A metro mom wants others to know that one common defect is nothing to fear. Everything can turn out beautifully.

Lily Niebaum is quite the charmer. If you look closely, you might see a little scarring above her lip. It's the only remaining evidence of the cleft lip Lily was born with 14 months ago.

"She was absolutely gorgeous. I kinda looked past the cleft as much as that doesn't even seem like it's possible," said her mother, Kari.

But Kari said others didn't look past it. Staring. Pulling back.

"We wanted to educate people about clefts. And we wanted to tell them and wanted to tell the kids that she's not hurting. She's okay," said Kari.

Kari said the family did hurt when they learned at 20 weeks of pregnancy that Lily would have a cleft lip. But they found a team at Children's Mercy Hospital -- where Kari happens to work -- that prepared them for Lily's birth.

"It's almost six to seven specialties all focused on this unborn child," said Dr. Shao Jiang.

Dr. Jiang said the team addresses the emotional and practical issues. That includes giving parents special baby bottles since a baby with a cleft lip cannot suck.

In Lily's case, they recommended a molding device that she wore every day to push back her gum and pull the lip sections closer together. It's an expensive item not covered by insurance.

Then at five-months-old, Lily had surgery to close the opening. Just one surgery is required these days.

"One surgery for a severe deformity often can be good enough to last a lifetime," said Dr. Jiang.

Kari said the family was in awe of the results although she admits a little sadness at seeing her baby's wide smile disappear.

"It's really great for people to say how beautiful she is out in public," said Kari.

It's what Lily's mom has known all along.

Lily didn't have a cleft palate, too. That would have required a second surgery. Children's Mercy sees more than 150 babies a year with cleft lips and palates.

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