Olivia Williams’ warm, bright smile may not be perfect, but it’s getting there.
Quick-witted and enthusiastic, the 15-year-old lights up when she talks about friends and family. A natural competitor, she plays tennis for her high school team.
She’s quick to come to the defense of kids she sees being mistreated because of physical differences, probably because she herself has looked different for most of her life.
“I was bullied my whole life,” says Olivia. “Last year a boy told me to kill myself.”
Olivia was born with a cleft lip and cleft palate. The skin of her upper lip and the bones of her palate didn’t form fully when she was in the womb, resulting in gaping spaces in both.
A succession of surgeons, dentists and orthodontists have been working to correct her condition for most of her life. Olivia has had eight operations and is on her third set of braces, this one to close wide gaps between her teeth. The extensive work isn’t finished yet, but it has made her cleft condition far less obvious than it used to be.
Clefts occur in about one in every 600 births. Malformations of the skull are less common, but such craniofacial conditions often create severe complications for children and fear and frustration for their parents.
As newborns, these children may need a feeding specialist because their misshapen lips can’t suckle properly. Chronic congestion can interfere with their hearing so they may need an audiologist and eventually a speech language pathologist.
By the time they turn 18, they’re likely to have required a plastic surgeon, an oral surgeon, an ENT, a specialized dentist, an orthodontist, a pediatric neurologist and a geneticist, along with a social worker and possibly a psychologist. Without timely care from many of those specialists, children with cleft or craniofacial birth defects may endure years of speech impediments, developmental and nutritional deficiencies and disfigurement.
Seeing so many specialists can be a nightmare for these families. That’s why, thanks to a partnership between Our Lady of the Lake Children’s Hospital, Louisiana State University Department of Otolaryngology— Head and Neck Surgery, and the LSU Department of Oral and Maxillofacial Surgery, Olivia and other patients like her no longer have to go it alone or bounce around among isolated specialists.
Members of the Cleft and Craniofacial Panel
The Cleft and Craniofacial Panel is a team of specialists representing every discipline and complication a patient is likely to experience. It is led by Laura Hetzler, MD, board certified in otolaryngology and facial plastic and reconstructive surgeon with the Center for Facial Plastic and Reconstructive Surgery at Our Lady of the Lake. The Panel is the sort of dream team for parents of children with cleft or craniofacial conditions from birth.
Dr. Hetzler’s co-directors on the Panel are plastic surgeon Taylor Theunissen, MD, and oral and maxillofacial surgeon George Zakhary, DDS, MD.
One Friday morning every eight weeks, the Cleft and Craniofacial Panel convenes at Our Lady of the Lake Children’s Hospital to provide comprehensive care to its patients. First, they each examine children individually, then the specialists meet to discuss and coordinate their various treatments for each child.
By coordinating the many procedures a child is likely to need, the Panel tries to reduce the number of hospital visits and shorten healing times.
Each family receives detailed notes from each specialist and a summary of all the next steps in their child’s treatment plan.
“It’s really been a blessing to have all of her doctors working together,” says Kate O’Deay, Olivia’s mom. “It puts us at ease to know that they are all working for a common goal and that their treatment plans are coordinated, and it will allow her to reach her goal faster.”
Life started getting better for Olivia when she became a patient of orthodontist James Fruge, DDS, after her previous orthodontist died unexpectedly.
Dr. Fruge put on what would be Olivia’s third set of braces. He also put her mom in touch with Dr. Zakhary, who performed a bone graft surgery to close a space in Olivia’s palate.
“Her care is all planned now, and hopefully we’ll have everything resolved when she’s a senior,” O’Deay says.
Olivia still needs at least two more major surgeries, including one in the summer of 2016 when Dr. Zakhary will move her lower jaw forward and close a hole in her palate. Dr. Zakhary and Olivia A baby photo shows Olivia's cleft lip But even after eight surgeries, it seems less daunting now. “We feel so blessed that we have such a great and caring team to treat her!” her mom says.
Dr. Hetzler and her colleagues created the Cleft and Craniofacial Panel in May 2014 to provide the kind of coordinated care needed by patients like Olivia. Too often, parents of children with cleft and craniofacial issues endure years chasing isolated treatments from various providers who don’t communicate with each other, Dr. Hetzler says. Worse, some parents never fully understand their child’s condition, and never receive a thorough treatment plan.
It’s one thing for treatments to be poorly timed, but in some cases children are left with severe, unnecessary complications. “If a patient doesn’t have a speech evaluation at the appropriate time they may then live with a speech deficit and unnecessary shyness for five years instead of having it fixed,” Dr. Hetzler says. “Their whole life maybe they’ve felt a little different when they didn’t have to.”
To learn more about the Panel, visit ololchildrens.org/cleft-and-craniofacial.