Twenty-month-old Olivia Rodriguez is as cute as a button — if buttons had huge brown eyes, curly little pigtails and a shy smile. She also has a large dark purple mark on her right cheek, just under her eye, that stretches across to her nose. Some might call it a birthmark, but the correct term is a congenital pigmented nevus.
The texture of Olivia’s nevus skin is different and more sensitive than her other skin and, as she grows older, the fine hair covering it will coarsen and grow. The nevus may become cancerous.
Olivia’ s mother, Jennifer Fulton, is not waiting for that to happen. She’s taking proactive steps to have the nevus removed, a delicate procedure since it is so close to her eye. Once the nevus is completely removed, Olivia will have a scar, but Fulton, 26, feels a scar is better than the health risks and the possible psychological trauma Olivia may have to endure.
“People asked me what I did when I was pregnant, what I ate,” said Fulton. “One lady told me two days after I gave birth that it was my fault because I got a flu shot when I was pregnant.” People stare at Olivia and often ask what’s wrong with her face.
Congenital nevus occurs during the first trimester of pregnancy during the development of the embryo. They are not hereditary and there is no external factor known to cause them.
At six months of age, Olivia underwent her first surgery to remove part of the nevus. “The surgeon removed half of it in the shape of an ellipse and the plan was to remove a little bit each time with multiple surgeries,” said Fulton. But the part that was removed came back because not all of it was removed at once. Olivia faced multiple surgeries.
“When she was born, I was very trusting of what the doctors said, but then I began to do research,” said Fulton, a 2005 Union Mine graduate. “Parents need to do their part and do their own research to be able to take the best action.”
The surgeon her health insurance recommended had little experience with nevus removal and other alternative choices provided by the health insurance were specialists in breast augmentation but, again, had little experience with nevus removal.
By chance, Fulton met a woman whose child also had a nevus. “She told me about a nevus support group, Nevus Outreach,” said Fulton. Through online chats with other parents of children with nevus, Fulton learned about firsthand experiences about the hazards of surgery, the best and worst practices and about the world expert in nevus removal, Dr. Bruce Bauer of Chicago.
She contacted Dr. Bauer, who was able to answer all her questions and who sent her a PowerPoint presentation of his removal process. “The other surgeons didn’t know some of the answers to my questions and they hadn’t done this type of surgery,” said Fulton. She was able to see Dr. Bauer’s work and talk online with parents of his patients. His two-step process removes the nevus and provides new skin to cover the wound.
“The first surgery was so hard for her; I don’t want to put her through 5 more surgeries as was planned — especially if we can more accurately and efficiently remove it in two or three surgeries,” said Fulton.
But here Fulton was presented with a dilemma: Her health insurance would not pay for surgery by an out-of-state, out-of-network provider. Should she continue with the five-surgery plan developed by the network surgeons who had little experience with nevus or go ahead with a two- or three-surgery plan with the world expert on nevus removal and face the expense without help from insurance? What would any parent do?
“When the cost of $13,060 to cover the surgeries came back, it was lower than I expected,” said Fulton. “It was doable. I didn’t want to wait this long, but I needed to do research, talk to the doctors and wait for the results of the grievance I filed.”
She filed a grievance with her health insurance, which was denied and so was an appeal. Fulton isn’t sure why the denial happened, except that Dr. Bauer is not a network provider. Medical sources are divided about whether removal of a nevus will remove the threat of melanoma or whether people with nevi have a greater chance for developing skin cancer at all.
For Fulton, it doesn’t matter. Faced with the choice of her child possibly developing skin cancer and most likely being bullied at school because of her prominent nevus, she’s choosing her child.
“It’s better to be safe than sorry. No one else is going to be her advocate — this is the best decision and I feel confident in the plan even if I have to pay for it myself.”
Fulton, her mother Gail, and Olivia will fly back to Chicago for the first surgery, which is scheduled for Nov. 15. The first surgery isn’t to remove the nevus, but to place tissue expanders near it to grow skin that will cover the area when the nevus is removed. Fulton will be taught to do the weekly fills to gently expand the skin and in eight weeks Olivia will have a balloon of skin behind her right ear. On Jan. 9, the second surgery will occur with Dr. Bauer removing the nevus and then folding the expanded tissue over the removal area and stitching it in place. Once Olivia and her mother return to their home in El Dorado, Bauer will work in tandem with Olivia’s pediatrician to oversee her care.
The surgeries are only the first cost — flights to and from Chicago, lodging, food and related expenses, including time away from her job as a credit union member service representative, are part of this as well. Fulton is a single mother and in addition to Olivia, she has an older daughter, Sofia, who is a kindergartener.
Through her own savings and Website donations, Fulton said, “I almost have enough for the first surgery. I have to believe that I will be able to find the rest.”
Anyone wishing to donate to help with the cost of Olivia’s surgical expenses may do so at donations4olivia.com or at the U.S. Bank on Missouri Flat Road in Placerville, account 253457509474.
Contact Wendy Schultz at 530 344-5069 or firstname.lastname@example.org. Follow @wschultzMtDemo on Twitter.