A tale of twins; once conjoined, now separate
ANTELOPE, Calif. — Aida Sandoval flipped pancakes in her Antelope kitchen as her twin 2-year-olds scooted feverishly across the kitchen floor. Seven months ago, toddlers Erika and Eva Sandoval were fused at the chest and had to navigate the house in a seven-limbed crab-walk. Now finally separated, the girls get around with surprising speed.
“Having them separate, it’s like the dayto-day for anybody with twins,” Sandoval says. “It’s a wonderful feeling, just to be able to make sure two more little babies get to adulthood.”
The girls are home and medically stable after a risky 18-hour separation surgery in December. As they grow into toddlers, they’re choosing different toys, developing distinct hobbies and expressing their own opinions on everything from dresses to Disney characters.
During the surgery, physicians at Lucile Packard Children’s Hospital Stanford in Palo Alto, Calif., avoided a tangle of blood vessels in the girls’ abdomen to separate their lower organs. The surgical team also sawed through their pelvic bone and removed their shared third leg for skin grafts.
The twins stayed at Lucile Packard for three months, fighting infections while their large wounds healed. They checked into UC Davis Medical Center in Sacramento, Calif., for two weeks of physical and occupational therapy before returning to Antelope in separate car seats.
At home with Aida and their father, Arturo, each girl scoots around using one leg and two arms. They will not need surgery in their immediate future, but they require continued wound care. They also use ostomy bags, which collect waste directly from their abdomens.
The girls never talk about their two years sharing a body, Aida Sandoval says. Sometimes, she forgets it herself.
“The whole conjoined thing is like a distant memory,” she says. “I know they were at one time, but this is just our life now.”
Eva and Erika crouched on the floor of their front entry room, each hunkered over a toy car in preparation for a race. Eva folded her right leg at her side, while Erika extended her left leg out with pointed ballerina toes. Side by side, their two tiny bodies still seem to fit together.
Erika especially likes toy cars, her mother says, but Eva likes to join in on the competition. When Erika’s orange pickup collides with Eva’s blue sports car, the twins erupt in high-pitched laughter.
The truck race is one of the few moments when the girls play together. Erika
likes fixing things and busies herself hammering at the walls and banisters with a plastic banana. Eva enjoys make-believe baking and serves everyone invisible cake and soda throughout the day. At their third birthday party next week, Erika will dress as a cowgirl and Eva as a princess.
It has been an evolution for Erika, who used to stare wide-eyed at strangers while her sister jabbered. Now she smiles constantly and squeaks out as many two-to-four word sentences as Eva does.
“She’s her own person,” Sandoval says. “Before it was just whatever her sister was doing. I love just watching them, learning their interests.”
Alice Dreger, author of One of Us: Conjoined Twins and the Future of Normal, says twins often undergo what’s called individuation, in which they try to distinguish themselves from each other because they look the same.
“The twin who was more quiet, more subdued, didn’t have to do a lot to take care of herself — the other twin was handling interacting with the world,” Dreger says. “Now she has to do that, and she’s rising to the occasion. In the case of conjoined twins, typically one of them is more organized and one is more communicative. If they get separated, that’s not there and you see positive growth.”
Because the Sandoval twins were separated so early in childhood, they likely won’t retain clear memories of having been conjoined, Dreger says. Studies show that most of those who are separated at an early age don’t suffer a sense of loss.
“It appears that conjoined twins are like the rest of us — almost all of us are comfortable in the bodies in which we’re born, and if changed early, most of us are also comfortable with that,” Dreger says. “People will show them pictures and they’ll have what we have from early childhood — reconstructed ideas of the way we were.”
Erika’s scar begins where her belly button should be, weaving its way down her torso in a jagged pink line until it reaches her bottom. Eva’s scar is longer, and puffier where the skin grafts are still settling.
While they were conjoined, Eva was bigger than Erika, and the care team wondered if she was absorbing more nutrients than her sister. Fewer of the shared organs fell on Erika’s side of the body, and surgeons worried she might not survive on her own. To everyone’s surprise, Erika has thrived since the operation and was discharged from the hospital earlier than Eva. Now, Erika weighs just a half-pound
less than her 20-pound sister.
Eva ended up with a large intestine, a small intestine and a colon, while Erika has just a small intestine. Their shared bellybutton did not survive the procedure.
“We learned a lot about the anomalies that they had, primarily in the pelvic area, and about all the different organ connections,” says Dr. Gary Hartman, lead surgeon from the Stanford team. “We learn a lot from each one of these cases; they’re all unique.”
Without a second hip joint, the girls can’t accommodate any prosthetic limb, although new modifications could make that possible in the future, Hartman says. The girls totter when they try to sit up straight, so they use hot pink wheelchairs from Shriners Hospitals for Children in Sacramento to get around outside. The chairs contain molded plastic braces that stabilize their torsos and keep their legs straight in front of them. The twins may need spinal surgery down the line to correct their scoliosis.
When Eva and Erika start preschool this fall, their individualized education program, a document that specifies goals for special needs children based on an assessment, sets an aggressive timeline for integrating into the classroom. By October, each twin should be able to stand while working at a table, and by June they should both be able to walk using an assistive device such as a crutch.
Just imagining the girls standing and walking brings Sandoval to tears.
“I’m definitely thankful that things turned out the way that they did,” she says. “I know they’re here with a purpose, they’ve made it this far. And what the future holds for them is just enormous.”
Formerly conjoined twins, Erika (left) and Eva Sandoval, push their bodies up in an attempt to stand up and show off for their mother while playing in the living room.