Formerly conjoined twins a step closer to home

Formerly conjoined twins Erika and Eva Sandoval, who were separated Dec. 6 at Lucile Packard Children’s Hospital Stanford, are making good progress toward learning to live as two people, their caregivers report.

The 2½ -year-old sisters are happy, chatty and motivated to learn new skills, the caregivers said. The twins are working with the hospital’s physical and occupational therapists and child psychiatrists to prepare them for their return home to Antelope, California.

“They’re doing great,” said Gary Hartman, MD, clinical professor of pediatric surgery at the School of Medicine, who led the 50-person team that separated the sisters. Erika was released from the hospital on Feb. 13 and is now staying nearby with her parents. Eva, whose surgery wound is healing more slowly, will stay in the hospital for several more weeks.

“It’s happening,” Aida Sandoval, the twins’ mother, said as she walked with Erika in her arms through the hospital and readied her daughter for her first ride in a regular car seat. “It’s surreal to be taking her out of the hospital for the first time as an individual.” 

Hartman and Peter Lorenz, MD, professor of plastic and reconstructive surgery, are evaluating whether a skin graft will be necessary to close Eva’s wound. The girls’ surgical sites were closed differently, which contributed to the time difference in healing.

Now that the twins are separated, each child has one kidney and one leg. Prior to surgery, Hartman had warned the twins’ parents, Aida and Arturo Sandoval, that the girls might not be able to sit up on their own after separation. Because of the way they were joined, the twins lack the abdominal muscles usually used to maintain balance.

However, both Eva and Erika are already sitting up for short periods with support from their physical and occupational therapists, and are sometimes able to balance briefly on their own. “In this respect, they’re way ahead of our expectations,” Hartman said.

‘Highly motivated and hard workers’

The team is also developing ways for the girls to play, reach for objects around them and adopt new movement patterns suited to their separate bodies. They will also be learning to eat more by mouth, since before separation much of their nutrition came from tube feeding.

“I’ve been amazed with the progress they’ve been able to make in a short time,” said Kelly Andrasik, an occupational therapist at Packard Children’s “For their age, they are highly motivated and hard workers, and that’s going to carry them really far.”

The caregivers are also enjoying seeing the sisters express their personalities. “They’re very sweet and fun-loving,” Andrasik said. “Eva loves it when we play with our wooden pizza set; she makes slices for everyone who comes into the room. Erika has also been really motivated by different things she wants to play with, such as bubbles and Mr. Potato Head. We’re learning from her how she is best able to use her body.”

At the same time, the hospital’s child psychiatrists are using play therapy to help the girls work through their feelings about the separation.

“Before separation, they were truly never by themselves,” said Michelle Goldsmith, MD, clinical assistant professor of child and adolescent psychiatry.

Most toddlers begin to understand that they are individuals around 18 months of age, but that process may have progressed differently for Eva and Erika because they had each other’s constant company. To help the twins understand their new state, Goldsmith’s team is encouraging each girl to play with a set of teddy bears that can either be joined together with Velcro to replicate the girls’ presurgery anatomy, or separated to look more like the girls now.

“We’re letting them know that it’s OK to be apart,” Goldsmith said. “We can say, ‘Yay, this bear wants to read a book, and that one wants to have a tea party, and they can come back together later.’” Since young children don’t have abstract conversations about their feelings, the play therapy gives the twins a concrete way to talk about their new reality.

“They do express preferences about whether they want the bears to be together or apart, and the play therapy normalizes that for them,” Goldsmith said. “Neither girl seems to have trouble adjusting; they’re both rolling with what’s going on very well.”

Once Eva is released from the hospital, they will both continue receiving physical and occupational therapy through an intensive outpatient or inpatient program near their family’s home.

Eva and Erika’s parents are ready for the next phase of the girls’ recovery.

“One of the hardest parts of their being conjoined was not being able to give them the individual attention they needed at different times, like when one was playful but the other felt sleepy or sick,” Aida said. “I am excited to have time with the girls separately and to bond with each.”