Wait for Life-Changing Surgeries Ends for Two Second Grade Girls
By: Marci Manley, KARK 4 News
Updated: October 2, 2012
An eight year old's heartbeat counts down the seconds of an intense six hour surgery at Arkansas Children's Hospital.
"She's a tough little girl," said mom Chrysti Turner. "She's been through several surgeries, from birth until now."
Just down the hall, seven-year-old Heather Aguilar awaits her turn with open arms.
"I'm that happy," she said stretching her arms out wide, sitting in green scrubs on a hospital bed. "I've been waiting on this for a long,long time."
"The long road she's been through, I think it's going to be a miracle for her," said her father John Aguilar.
Heather was born with a rare birth defect, known as Hemifacial Microsomia, leaving her without a jaw on the left side of her face.
"I'm so happy I'm getting my jaw fixed," she said, literally bouncing up and down with excitement.
The condition, caused by a lack of blood flow to the affected area during development and present at birth, makes it difficult for her to breathe without a tracheotomy tube.
"Heather has the most serious one because she has nothing there," said Dr. Barbera Honnebeir. "We grade the seriousness on how much of the mandible (jaw) is there. She doesn't have any jawbone on the left side."
In surgery, Dr. Honnebeir takes out one of Heather's right rib bones to reconstruct her jawline.
Floors above in the ICU, Lillykay Turner awakens in recovery.
"You're okay," mom Chrysti said, looking at her daughter's bewildered face.
"You know, you don't know if you're doing the right thing -- because she's in so much pain," Turner added, wiping away tears.
Like Heather, Lillykay spending time on the operating table for a rare condition, known as Nager Syndrome, one only documented in 55 other people.
"We want to give her the best quality of life, if they can do that," Turner said. "Right now, she can't eat. We all love to eat, I'd love for her to be able to enjoy that some day."
Lillykay's jaws have been fused together since birth, the result of a genetic defect. She was also born without thumbs, which have been reconstructed through surgery. She is fed through a tube in her side, and she's never been able to open her mouth. That is, until today's surgery.
"She had a very complex operation today with a multitude of things," Dr. Honnebeir explained. "Essentially, we had a surgery a year ago where we lengthened her jaw line. Today, we have to go in and remove the bone from the mandible. We then have to take soft tissue from her temple and insert those into the joints, so they don't fuse again. Then, we have to put a device on to stretch the joints so they can function."
Despite all of that, and the intense pain she must be feeling, Lillykay's mom expects in a few days, she'll see her daughter smile.
"She doesn't let anything get her down," she said. "My husband and I have talked about that a lot. We wonder at what point will she just wake up mad at the world, because of what all she's been through. But it's never happened, and it won't. These will be a rough few days, and then she'll be back to her bouncy, happy self."
In Dr. Honnebeir's OR, these operations for two second-grade girls, prove life is about more than just moments measured in heartbeats.
"After everything's said and done..some day she'll be able to accomplish everything -- the goals she wants to do in life," said John Aguilar about his daughter. "She'll be able to do everything she's ever dreamed of doing."
Today is the light at the end of a long tunnel, when these families can begin looking forward to their daughters' futures instead of just their next scheduled surgery.
"She's a tough little girl," said mom Chrysti Turner. "She's been through several surgeries, from birth until now."
Just down the hall, seven-year-old Heather Aguilar awaits her turn with open arms.
"I'm that happy," she said stretching her arms out wide, sitting in green scrubs on a hospital bed. "I've been waiting on this for a long,long time."
"The long road she's been through, I think it's going to be a miracle for her," said her father John Aguilar.
Heather was born with a rare birth defect, known as Hemifacial Microsomia, leaving her without a jaw on the left side of her face.
"I'm so happy I'm getting my jaw fixed," she said, literally bouncing up and down with excitement.
The condition, caused by a lack of blood flow to the affected area during development and present at birth, makes it difficult for her to breathe without a tracheotomy tube.
"Heather has the most serious one because she has nothing there," said Dr. Barbera Honnebeir. "We grade the seriousness on how much of the mandible (jaw) is there. She doesn't have any jawbone on the left side."
In surgery, Dr. Honnebeir takes out one of Heather's right rib bones to reconstruct her jawline.
Floors above in the ICU, Lillykay Turner awakens in recovery.
"You're okay," mom Chrysti said, looking at her daughter's bewildered face.
"You know, you don't know if you're doing the right thing -- because she's in so much pain," Turner added, wiping away tears.
Like Heather, Lillykay spending time on the operating table for a rare condition, known as Nager Syndrome, one only documented in 55 other people.
"We want to give her the best quality of life, if they can do that," Turner said. "Right now, she can't eat. We all love to eat, I'd love for her to be able to enjoy that some day."
Lillykay's jaws have been fused together since birth, the result of a genetic defect. She was also born without thumbs, which have been reconstructed through surgery. She is fed through a tube in her side, and she's never been able to open her mouth. That is, until today's surgery.
"She had a very complex operation today with a multitude of things," Dr. Honnebeir explained. "Essentially, we had a surgery a year ago where we lengthened her jaw line. Today, we have to go in and remove the bone from the mandible. We then have to take soft tissue from her temple and insert those into the joints, so they don't fuse again. Then, we have to put a device on to stretch the joints so they can function."
Despite all of that, and the intense pain she must be feeling, Lillykay's mom expects in a few days, she'll see her daughter smile.
"She doesn't let anything get her down," she said. "My husband and I have talked about that a lot. We wonder at what point will she just wake up mad at the world, because of what all she's been through. But it's never happened, and it won't. These will be a rough few days, and then she'll be back to her bouncy, happy self."
In Dr. Honnebeir's OR, these operations for two second-grade girls, prove life is about more than just moments measured in heartbeats.
"After everything's said and done..some day she'll be able to accomplish everything -- the goals she wants to do in life," said John Aguilar about his daughter. "She'll be able to do everything she's ever dreamed of doing."
Today is the light at the end of a long tunnel, when these families can begin looking forward to their daughters' futures instead of just their next scheduled surgery.
