Lai has never been to school. And since the tumor is heavy and located on one side of her body, even walking has become a challenge.
Tragically, the growth, known as a schwannoma tumor, started off as little more than a cyst on Lai's tongue. At this stage, the surgery to remove the growth would have been quick, cheap and relatively painless. But Lai had little access to medical care where she lived, leaving the tumor to continue to grow.
Now, a team of surgeons at the University of Miami is preparing for a marathon 10-hour procedure next Tuesday intended to cut away the growth, which now weighs an estimated 10 pounds and could be the largest recorded tumor of its kind reported in the medical literature.
The good news: the surgeons believe that once the tumor is successfully removed, it will not likely return. And they say they are hopeful that the operation will give Lai a chance at a more normal life.
"We see these in the United States. But when we see them, they are marble- or golf-ball-sized," notes Dr. Robert Marx, professor of surgery and chief of the division of oral and maxillofacial surgery at the University of Miami/Jackson Memorial Medical Center. "If we didn't get to this tumor in a reasonable time, it would have choked off her airway. In six months to a year, this could have ended up with a tragedy due to airway obstruction."
"If everything goes well, she's going to look very decent from an aesthetic standpoint and the whole tumor is going to be removed," said Dr. Jesus Gomez, oral and maxillofacial surgeon at the University of Miami/Jackson Memorial Medical Center, in a press release Tuesday. "This is the surgical removal of a tumor, but we will be doing reconstruction at the same time."
Surgery Not Without Risks
Considering the magnitude of the surgery, it is little surprise that the procedure carries risks as well. One of the most crucial facets of the procedure is controlling the bleeding from the many blood vessels that supply the tumor.
"Our biggest concern is the huge number of blood vessels going into the tumor," Marx says. "We estimate the tumor weighs about 10 pounds, so it's like a newborn baby."
"We saw vessels that were over an inch in diameter," Gomez adds. "So the bleeding complications that we can have on the operating table are potentially very big. We are setting up a huge team in order to accomplish this in a safe manner."
Still, the nature of the surgery will allow Marx and Gomez to perform a significant amount of reconstructive work as the tumor is removed. The surgeons will be faced with the considerable task of realigning Lai's jaw and reconstructing the bone and soft tissues that have been distorted by the massive growth. Marx says the techniques they plan to use will allow them to hide and minimize scars, allowing for a better appearance along with better function.
"We expect her to look better, speak better, swallow better and, by extension, eat better," he says.
A Courageous Patient
Despite what promises to be an extensive surgery, those around Lai say that she is handling the experience well.
"She is so positive," said Janelle Prieto, communications director of The International Kids Fund (IKF) -- the program that arranged for the procedure to remove Lai's tumor. "From the day she got here, she told us that she wanted to be involved in fundraising for us. She knows that she is being helped."
And Prieto adds that while the surgery promises to be challenging, Gomez has told her that after the surgery "she is going to live a fantastic life."
"She has great, great chances of living a normal life after this," Prieto says.
After the initial surgery to remove the tumor, it is likely that Lai will also undergo a series of less extensive cosmetic procedures to correct the appearance of her mouth and lower face.
Paying for a Pricey Surgery
The price tag of the surgery is steep -- estimated to be $107,000. And while the Holtz's Children's Hospital at Jackson Memorial Medical Center has offered to perform the surgery at a charitable rate, Prieto says IKF is still looking to generous donors in the community to help support the cost of the surgery.
But for Lai, who is eager to attend school like other girls her age after the surgery, the results could be priceless.
"What we hope to do is get her into the normal lifestyle of her village," Marx says. "Our endpoints would be that she goes to school, that she begins having friends who accept her as an equal. We're hoping to get her back into the mainstream of her culture."
For information about how donations can be made online, visit www.internationalkidsfund.org. For further information, potential donors also may write to info@internationalkidsfund.org.
