Look at 7-month-old Sloan McGillis from her right side and she looks like every other infant: cute, bright-eyed and curious with a crop of short, light-colored hair.
When she turns around, though, Sloan shows what has made her stand out every time she’s been in public since she was born: a large, benign vascular tumor called a hemangioma that takes up most of the left side of her face.
“Think about it like a piece of broccoli, the carotid artery coming up and busheling out right here,” Jenny McGillis said, touching the side of her daughter's face.
On Feb. 25, Sloan was born at Community Medical Center. On her third day, Sloan and Jenny were moved into the hospital’s Neonatal Intensive Care Unit, or NICU, because of the growth on her face. The tumor likely developed close to childbirth, and was never seen on ultrasounds.
“She was born, and no one in Missoula knew exactly what it was,” Jenny said.
The newborn was put on beta-blocker medication, which has been shown to be effective in treating hemangiomas. Most of these vascular tumors start to develop post-birth, but Sloan’s had been congenital and, in her case, the drug did not have much of an effect.
At 11 days old, Sloan and her mom were flown to Seattle Children’s Hospital.
“They told us they were afraid for her heart. How much blood her heart was having to pump because the tumor is filled with blood vessels,” Jenny said.
At 13 days, doctors took a biopsy of the tumor and sent the McGillises home where Sloan and Jenny live with her husband, Joe, and their 3-year-old son, Keaton.
In a follow-up call, doctors in Seattle incorrectly diagnosed Sloan’s condition as one of the worst-case scenarios of the growth, saying she had kaposiform hemangioendothelioma, or KHE, which would require chemotherapy to treat.
“We hung up the phone and I just burst into tears,” Jenny said.
The next week, an oncologist from Seattle called them, saying he thought it was best to wait until Sloan was two years old to start treatment.
Jenny started to look for a second opinion, and reached out to Dr. Milton Waner in New York, one of the world’s foremost experts in vascular anomalies and hemangiomas. He looked at pictures of Sloan’s face and told her mom he didn’t think the diagnosis was right, suggesting she have the biopsy samples sent to a pathology lab at Boston Children’s Hospital to be looked at again.
After the samples were sent, another visit and negative experience with doctors in Seattle solidified in the McGillis’ mind that they needed to switch Sloan’s care to Dr. Waner.
In June, Jenny and Sloan went to New York to meet Dr. Waner and his oncologist, Dr. Francine Blei. Results from the pathology lab showed that Sloan’s growth was not KHE, but instead a more manageable tumor called rapidly involuting congenital hemangioma. Dr. Waner was also encouraged by signs that the tumor had been shrinking and softening in the months since Sloan’s birth.
“When she was born, it was hard as a rock,” Jenny said. “It was like having a grapefruit under your skin.”
The doctor advised waiting to see how much the tumor would shrink by the time Sloan was about eight months old before deciding when surgery should happen to remove the rest. Once again, Sloan and her mom came home to Missoula to wait.
A week ago, Sloan and her parents traveled to Irvine, California, to attend the annual conference of the Vascular Birthmarks Foundation, where Dr. Waner was presenting. There, the doctor told them that while the hemangioma had continued to shrink, the pace was very slow. It likely wouldn’t continue to shrink significantly, and he was ready to operate.
So the surgery is set.
On Jan. 6, 2016, Sloan will have the vast majority of the tumor removed in a procedure at Lenox Hill Hospital in New York. Now, the problem: Lenox Hill doesn’t accept Sloan’s Montana Medicaid insurance, and it isn’t worth the hospital going through the application process to become a provider for a single patient, Jenny said.
“No matter what happens, the surgery is happening,” she said.
Jenny and her husband have already filed for financial aid through the doctor and hospital, but don’t know what they will receive, if anything. Right now, the cost will be coming out-of-pocket.
While the family has yet to see an estimate, Jenny said the procedure will likely cost more than $100,000. That’s on top of the travel and lodging costs of a 12-day stay in one of the most expensive cities in the world.
The McGillises said they don’t know how they will be able to afford all of the costs associated with having the operation.
“You do anything for your kids,” said Joe, who runs an excavating company in Missoula. “I have a tough time receiving help from people. But you have to realize there are times in your life when you need some help.”
Despite the size and location of the tumor, Sloan’s parents said they consider themselves lucky. For the growth she has, the hemangioma is in the best place it could be. It isn’t directly interfering with Sloan’s eye or nasal passage, sits on the outside of her cheek tissue, and isn’t painful.
However, among the worries is that if it stays there long, it could affect the muscles on the left side of the girl’s lips. Right now Sloan wears a bib all day long to catch the drool that falls because she can’t fully close her mouth.
“She just doesn’t seem to know it’s there. She was born with it, she’s grown up with it,” Jenny said. “We’ve done nothing to treat it as a disability.”
The parents say one of their biggest worries is about how Sloan will be treated growing up if the tumor isn’t removed.
“The world is cruel sometimes,” Joe said.
Sometimes adults are worse about it then other children, Jenny said. Many parents of children with hemangioma are accused of child abuse, she said, with other parents thinking the growth is the result of some type of mistreatment.
Jenny said hemangioma are not well understood by the public and even by many doctors, but awareness is spreading. The most recent update to the major guidebook for pediatricians has bumped the coverage of the growths up from a single paragraph to more than 30 pages discussing how to diagnose and treat the tumors.
“I’ve educated myself more than I ever wanted to on them,” Jenny said.
For more information about Sloan McGillis and her family, visit facebook.com/sloanemery. The site includes a link to an online fundraising page through a service called YouCaring to help raise money for Sloan’s procedure in January. A medical fund has also been set up in Sloan McGillis' name at Treasure State Bank in Missoula.