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Conjoined twins face dangerous separation

‘They want life, and they’re going to fight for it.’

November 22, 2016 3:00 PM

In a quiet waiting room of Lucile Packard Children’s Hospital at Stanford University, Aida Sandoval settles into an upholstered green chair to watch a video she knows will break her heart. It’s just past 8 a.m., and she has a headache, having woken before sunrise to get her twin daughters to their doctor’s appointment.

On the screen, 2-year-olds Eva and Erika, who are conjoined from the chest down, lie on an operating table, intubated and under anesthesia as surgeons prepare to insert three balloon-like tissue expanders into their sides and back. It’s just a few minutes of video, but seeing them so still and helpless, their bodies pocked with tubes, sends the usually cool and collected mother into a fit of tears.

Her husband, Arturo, stocky and soft-spoken, has chosen not to watch, instead sipping a coffee and picking at a tray of blueberry muffins he purchased on impulse the night before.

The couple are bracing for a complicated operation scheduled for the end of this year to separate the twins – a procedure that doctors say poses a 30 percent chance of death for either or both of the girls. Fused from sternum to pelvis, the twins share a liver, bladder and third leg that ends in a seven-toed foot. Their uteruses are joined, and their digestive system is a tangled mass of intestine.

Arturo Sandoval, right, moves a dresser with help from his brother-in-law, John Pineda. The family made the difficult decision to split their lives between Antelope and Palo Alto so the twins could be closer to their Stanford medical team.

Aida and Arturo recently made the painful decision to split their household between Antelope, the Sacramento suburb where they own a home, and Palo Alto, where Aida and the girls have moved into an apartment to be closer to the hospital. Arturo, who works as a heavy equipment mechanic in construction sites across Northern California, visits when he can.

If the surgery is successful, Erika and Eva will gain the freedom to explore the world as two separate bodies, reshaping life as the Sandovals have known it for the past two years.

“This will never be again – them together like that, them as one,” said Aida, 47. “The ball is rolling, and we’re just trying to catch up. We take it one day at a time; that’s all we can do right now.”

As few as one of every 200,000 births results in conjoined twins, making the condition 200 times rarer than Down syndrome. About 50 percent of conjoined twins arrive stillborn, and 35 percent survive only one day, according to the University of Maryland Medical Center.

The Sandovals had been married 25 years, and had three grown children, when Aida unexpectedly became pregnant at age 44 in 2014. A few weeks in, doctors determined the twins were conjoined and urged her and Arturo to reconsider, citing the dangers to both her and the unborn children. The product of a religious Mexican family, Aida said she didn’t think twice about having the girls. Raising them was her calling, she thought, and she wasn’t giving up no matter what they looked like or how hard it got.

She left her job as an airline customer service agent and devoted herself to their survival.

It’s that same unwavering resolve that she’s counting on to get them through the coming weeks. On a recent Sunday, as the girls watched “Winnie the Pooh” in their Palo Alto apartment, Aida gazed at them with a serene smile. The girls squeaked out the names of their favorite characters – “Tigger!” “Rabbit!” “Piglet!” – talking over one another while sitting on a trundle bed, their bodies balanced against fluffy pillows and their three legs fanned out around them. Aida ran her fingers through the wavy brown hair on each of their heads.

The Sandovals settle into their new apartment in Palo Alto in October. Aida has struggled to care for the twins in their temporary home while her husband, Arturo, stays in the Sacramento area for work.

“I just want to scream it to the world – they’re so precious, and so beautiful,” she said. “You just have to remember that doctors tell you the worst. I have faith in God, and I know that if it’s meant to be, it will be.”

“They want life,” Aida said, “and they're going to fight for it.”

Kisses and tug of war

It was playtime at the Sandoval home, and the twins were on the move, their bodies propelled in a swirl of of arms and legs.

Eva, the larger and stronger of the two, launched into an arched crab walk, lifting Erika off the ground. She thrust forward with two arms and one thick leg, while her sister scrambled to support herself on spaghetti-thin limbs, sometimes giving up entirely and letting herself be dragged along.

Eva’s torso juts out from her sister’s at a near 90-degree angle, leaving Erika’s small head hanging just inches from the floor as Eva careened left to right. Still, Erika giggled along with her sister as they crossed the room. Their third leg, which can be controlled by either girl, hung limply at their side.

“Eva is a little more dominant,” said Arturo, 52. “She pretty much directs where they’re going to go. Erika may be little, but she’s a little strong, too. Sometimes Erika gets hurt. But they move around pretty good.”

Their difference in size and strength is just one factor driving the decision by surgeons at Lucile Packard to risk separating them. They initially hoped to operate in early 2016, but because of recurring medical problems and the need for more imaging they have repeatedly pushed back the date. The surgery now is scheduled for early December.

Eva Sandoval, the larger and more dominant twin, drags sister Erika along while playing in their apartment. Doctors worry the constant tussling between the two girls could hurt Erika if they remain joined.

Born in August 2014, the girls spent their first seven months at Lucile Packard. In the months since moving home, they have contracted more than two dozen urinary tract infections, a side effect of their shared bladder. Because the organ is mostly on Eva’s side of the body, she likely will keep it after separation, while surgeons provide Erika with a tube and colostomy bag for her kidneys to drain into.

The twins have struggled to keep down food and liquid as a result of their partially shared digestive system and have been to an emergency room for dehydration-related fevers more times than Aida can recount. They still take in liquids through feeding tubes inserted in their noses.

Life as conjoined twins will only get more perilous as their bodies and personalities grow, said Dr. Gary Hartman, the lead surgeon in their case.

“There are the UTIs; there’s the muscular skeletal issue – we’re seeing curvature of the spine,” he said. “These things would continue if they were to remain conjoined. With this growth disparity, Erika becomes more and more at risk of injury, just because Eva is so big and so strong.”

Eva and Erika Sandoval spent their second birthday at Lucile Packard Children’s Hospital. The girls were hospitalized for seven months after birth, and since have endured dozens of medical appointments and emergency room visits.

Doctors worldwide have successfully performed separation surgeries on conjoined twins only a few hundred times before, meaning at least one twin survived the procedure for the long term, according to the American Pediatric Surgical Association. The Sandoval twins present an especially difficult challenge because after separation, each will lack much of their bodies where they once were conjoined.

“If you drew a line from the side of your ribs to your belly button, then between your legs and then around the backside to the ribs again, that’s how much they’re going to have missing after they’re separated,” said Dr. Peter Lorenz, the pediatric reconstructive surgeon who will operate on the girls. Eva may be able to keep the third leg the girls now share, but both twins will need extensive reconstruction of their bodies from the abdomen down.

Since September, the twins have lived with three tissue expanders inserted into their torsos to help grow extra skin for grafting. As the skin has stretched, it’s become painfully sensitive to touch. Now that the expanders have inflated to the size of soda cans, the skin is thin and vulnerable to infection if the girls move too much, Lorenz said.

Keeping them still is no easy task. If one child turns a page of their storybook, the other turns it back. If one has a toy in hand, the other undoubtedly will reach for it. Aida admonishes them to “share with sister” and “give it to sister,” but the rivalry persists, exacerbated by their involuntary closeness.

Like all toddlers, they also jockey for attention. They’re both animated and perceptive, and speak in short sentences. “All done,” Eva will say when she wants a medical procedure to be over. Their parents speak to them in both Spanish and English, and are teaching the girls sign language. When nurses ask them what movies they want to watch during their vital checks, they stumble over each other with requests for Nemo and Elsa.

Aida Sandoval tries to soothe the twins after a surgery to insert balloon-like tissue expanders in their sides and back. Eva calls out, “All done, all done” to send away the pain.

The sisters have sweet moments, too, when they kiss and rub noses. At medical appointments, they’ll grab a stethoscope and listen to one another’s heartbeats, to the amusement of their care team.

On a recent afternoon in their apartment, Aida coaxed the twins into a chat about favorite foods. Eva listed blueberries, chocolate and cookies, while Erika looked quizzically at her mom. In a singsong voice, Aida prompted her: “Does Erika like mangoes?”

Erika broke into an ear-to-ear smile, turning her tiny palms to the ceiling in exaltation before bringing them together in clumsy applause. For a rare moment, Eva stayed quiet, leaning back and sipping on a squeeze pouch of blueberry goop.

When the twins are finally separated, Aida looks forward to seeing Erika’s personality emerge from her sister’s shadow. She can envision them as two separate bodies and the two special people she knows they’ll become.

“In moments where one is tired or she’s sick, and the other wants to go play, I want her to be able to do that,” she said. “That’s something they’ll get when they’re separated – their individual limelight.”

‘Arturo’s Angels’

Aida and Arturo met on a blind date when Aida was just 16 and Art was 21, at the prompting of one of Arturo’s cousins. They married a few years later. Both hoped for a large family and moved to Antelope, where they raised their three older children: Aniza, 26, Esmeralda, 25, and Emilio, 19. The walls of their two-story home are bright with graduation pictures and holiday portraits, some featuring a family offive, others including the twins.

The older children since have moved out, fanning to different cities, and Esmeralda has an infant of her own. With Aida and the twins in Palo Alto, Arturo is mostly alone at the house. On weekdays, he travels to job sites, repairing bulldozers, forklifts and other heavy equipment. At night, he returns home to make a meal and maybe watch a game before heading to bed.

Arturo Sandoval and his brother Ruben cook enchiladas for a fundraiser to help cover the family’s living expenses in Palo Alto. “It’s just depleted our savings,” Arturo said. “I have to support the family. I’ve just got a lot of jobs to do.”

Most weekends, he drives the family Chrysler to Palo Alto, bringing a week’s worth of enchiladas or a tray of pork chops and mashed potatoes for Aida. He worries about not being there enough for the twins, he said, but with a mortgage to pay and now the apartment rent at nearly $6,000 a month, he knows he has to work. The family took on the apartment at the urging of their doctors, who wanted the twins close by.

“It’s just depleted our savings,” he said. “I can’t be here for everything. I have to support the family. I’ve just got a lot of jobs to do.”

Arturo said he considers himself a supporting actor in his family, with Aida – a chatty extrovert – handling conversations with doctors, media and inquisitive strangers. As she can, she updates a Facebook page – titled “Arturo’s Angels: Born as one, soon to be two” – with pictures and videos of the twins at physical therapy or on a trip to Disneyland.

The family also has started a page on the crowdfunding site YouCaring to raise money for rent and medical expenses. They paid the first month’s rent in Palo Alto with donations.

Spending so much time alone with the twins can be stressful. Moving them in and out of the tub, the double stroller, the bed means lifting 42 pounds and five limbs. Aida feels isolated from her family and friends in Sacramento.

“I feel like I’m doing this by myself,” she said. “At these last two injections (the girls) have both cried for Art. It breaks my heart. ... I miss having someone to be with at night, to talk about everything with.”

When she needs strength, she takes the girls to the ornate Stanford Memorial Church to pray. On a recent visit, she wheeled the stroller beneath the church’s domed ceiling and intricate mosaics, stopping before the altar. “Angel,” Eva said, pointing upward. “Pray.”

Aida Sandoval has been caring for the twins largely on her own in recent weeks, renting an apartment in Palo Alto to be closer to their medical team. She says she draws strength from her faith, and here visits Stanford Memorial Church.

DeEtta Barnhardt, a social worker at Lucile Packard, regularly checks in with Aida, and has tried to prepare her for all possible outcomes. Aida is focusing for now on the best-case scenario – she wants the girls to be brought out after separation on the same bed, she said, so that she won’t be startled to see them apart.

“She’s already starting to process that in her mind, of what that’s going to be and what that’s going to look like,” Barnhardt said. “She has to manage the loss of what the girls were and the hope of what they can become.”

On an October evening in Palo Alto, Aida began her usual bedtime ritual of reciting her favorite prayer with the twins.

“Now I lay me down to sleep,” she said as Eva followed along, smiling wide and wriggling, while Erika watched. Aida held up Erika’s hands and placed them in a praying position. “Erika, now you do it,” she whispered.

The words didn’t come out perfectly, but her daughter’s high-pitched voice matched her mother’s rhythms. Aida’s tears welled as the three finished their prayer.

“I’ve just never heard her do that by herself before,” Aida said.

The couple can’t always keep it together, she said. And looking too far ahead can seem daunting. But at the end of the day, they fall back on faith.

“I have a deep feeling that everything is going to be fine, and it hasn’t failed me yet,” Arturo said. “They’re fighters – you can see it in them. They’ll make it.”

Sammy Caiola: 916-321-1636, @SammyCaiola

Erika Sandoval sits up in the crib she shares with Eva in their Antelope home. “Erika may be little, but she’s a little strong, too,” said their father, Arturo.