When Lebanon’s Stephanie and Michael Smith brought home their twin daughters, Lili and Libby, in 2004, the infants’ hospital bracelets were the best way the new parents found to tell the nearly identical girls apart – until Lili developed a small birthmark on the top of her head at about 1 week old.
Stephanie cut off the bracelets and did not think much further about the small birthmark – until it kept growing.
“I swear, it grew from nap to nap at the beginning,” said Stephanie.
Within two to three months, the small birthmark grew to nearly the size of a grapefruit. The birthmark – called a hangioma – grew so much, so quickly that the skin split and ulcerated.
Lili’s pediatrician told her parents there was not anything to be done about it since it was just cosmetic. Stephanie and Michael were not satisfied with that response.
“Every night, after the girls went to bed, I would get on the computer and research,” said Stephanie.
Eventually she found Dr. Milton Waner in Manhattan, N.Y. - one of the world’s top vascular anomaly surgeons. When the twins were 10 months old, the family went to New York, and Milton removed Lili’s hangioma, which by that point extended down into her skull.
Despite the size of Lili’s hangioma, Stephanie said Lili probably would not have experienced any medical side effects from it if it were never removed. The Smiths’ insurance initially denied coverage for the procedure because it was deemed cosmetic.
Stephanie and Michael, however, were determined to save their child from the emotional trauma of such a significant physical abnormality.
“People aren’t nice,” said Stephanie. “When she was just a little, bitty baby, people would gasp in horror – I wanted to save her from that.”
Eight years later, she has done just that.
“She was so little, so she really only knows the things that we told her,” said Stephanie. “To her, it was that one moment in time, and it was over.”
On Nov. 17, though, Lili will help other children with similar conditions.
Waner Children’s Vascular Anomaly Foundation, a nonprofit organization to help provide surgeries for children with vascular anomalies, will honor Lili at Tea and Tiaras in Cookeville. The event, featuring tea, crafts, a runway walk and more, will help raise funds to pay for surgeries for children whose families cannot afford them.
“We were really surprised,” said Stephanie. “It’s been a long time since her journey with Dr. Waner – it seems like forever ago.”
The event is held each year in Little Rock, Ark., but this is the first year the event will be in Cookeville.
Janna Huie, surgical assistant for Waner at the time of Lili’s surgery and board member for the Waner Children’s Vascular Anomaly Foundation, decided to organize the Cookeville event after relocating there from New York.
“Lili was one of my absolute favorite patients,” said Huie. “Her hangioma was very distinct, and they traveled a far distance.”
The drive to Cookeville should be considerably shorter.
Staff writer Sara McManamy-Johnson can be reached at 615-444-3952, ext. 16 or firstname.lastname@example.org.