In Fam­ily

A tale of twins; once con­joined, now sep­a­rate

Northwest Arkansas Democrat-Gazette - - STYLE - SAMMY CAIOLA

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.”

SPLIT PER­SON­AL­I­TIES

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.”

MED­I­CAL MAR­VELS

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.”

Sacra­mento Bee/TNS/LEZLIE STER­LING

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.

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