Parents Cope With Faceless babby's Defect
Posted: Fri May 09, 2008 9:44 pm
http://www.wnbc.com/news/4006467/detail.htmlWhen most parents have a babby, they spend months dreaming about what their new bundle of joy will look like, but for one Florida family, the birth of their daughter wasn't the answer to their dreams.
Their daughter was born without a face, and her family is now trying to cope with her rare birth defect.
"She's got pianist hands and ballerina feet," says Juliana Wetmore's father, Tom. "She's my firecracker."
When his wife, Tammy, was pregnant, the Wetmores knew something was wrong -- at worst, they thought, maybe their babby had a cleft lip. At the hospital for their delivery, it was big smile until the birth.
"The nurse is like, 'We've got her stable; we need to rush her upstairs,' " said Tom
The nurse asked Tom, "Do you want your wife to see her now?"
"Before she gets the shock I did, let me take a picture so she's prepared," Tom remembers saying at the time.
Tammy hadn't seen her new babby yet because she almost bled to death during Juliana's delivery, so he went to photograph his new daughter.
"I went in to take this picture ... which was the first picture, of course, we had of her," said Tom.
Juliana is missing 30-40 percent of the bones in her face. She has no upper jaw, no cheekbones, no eye sockets, and she's missing the corner of her ear. Her birth defect is called Treacher Collins syndrome. Doctors said that it is the worst case they've ever seen.
Juliana has to eat through her stomach, and she has a trach tube to breathe. She has had 14 surgeries, and she's now 20 months old. She could have 30 more operations. Doctors make a mold of her head, and then reconstruct her skull to figure out the next step. They've already stretched her jaw out quite a bit in the operating room.
"They saw through the bone so they can access behind the bone structure and graft the bone that they need," said Tom. "I'm just grateful she's still here with us."
If you are interested in helping the Wetmore family, a savings account has been set up for donations at the VyStar Credit Union in Middleburg, Fla. Donations can be made to Juliana Wetmore at member number 2102465.
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Pictures are on the site. Be careful, it's a little disturbing.
This must really suck for the parents. She's going to be a huge burden for the rest of her life. At least the surgeries are going well so far.
