Health & Medicine

Life with conjoined twins: Antelope family faces rare challenges

Their mother calls it “the butterfly,” because its shape and symmetry remind her of a delicate winged insect.

The tiny foot – a fusion of bone, muscle and skin with three toes on each side – is attached to a third leg shared by Erika and Eva Sandoval, 11-month-old conjoined twins who also share a liver, some intestinal tract and much of their reproductive systems. Joined at the pelvis and sternum, they sit face-to-face at all times.

The sisters, born at Lucile Packard Children’s Hospital Stanford last August, spent their first seven months in intensive care before coming home this spring, having trumped the slim survival odds for conjoined twins – a phenomenon that occurs about once in every 200,000 births.

Now living at home in Antelope, they most likely will undergo separation surgery sometime next year.

For parents Art and Aida Sandoval,the past 12 months have been a blur of doctors’ appointments interspersed with other concerns, from figuring out how to dress the girls to how they can ride safely in a vehicle.

But to their 45-year-old mother, it’s all part of a rare blessing.

“They are two little people and they are fine,” she said, smiling down at their sleeping bodies on a recent spring night. “They are perfect.”

With hair tied back and sleeves rolled up, Aida handles their conjoined bodies – now a combined 29 pounds – with ease. She’s perfected a sing-song inflection that makes the girls beam, and knows what to do when they pull out their feeding tubes, an incident that only a few months ago had her calling a nurse in a tearful panic.

It’s not that she’s new to parenting. Art and Aida, married for 25 years, were readying themselves for empty nesthood in March 2014. Their youngest child Emilio, now 18, was about to finish his junior year of high school. Their older daughters, now 23 and 25, were working locally.

Aida’s pregnancy was a shock, followed by even more surprising news when technicians spotted two heads on the ultrasound. Aida took a deep breath and crossed her fingers for boys.

In April, the technicians saw something else in Aida’s scans: a club foot, they thought. Maybe a shared umbilical cord.

Dozens of appointments and four physicians later, the Sandovals learned that their twins were conjoined. Doctors painted a bleak picture – 40 to 60 percent of conjoined twin pregnancies result in stillbirths. By carrying her pregnancy to term, doctors said, Aida also would be risking her own life.

The couple were given the option to terminate the pregnancy several times. Art feared for Aida’s health, but Aida wouldn’t hear it.

“I’ve already lived a full life,” she recalls thinking. “I can bring two more into the world.”

Shared struggle

Later that spring, Aida left her job as a customer service agent at Sacramento International Airport. By July she was checked into the Packard hospital in Palo Alto, where she would stay for the duration of her pregnancy. It was a necessary precaution, doctors said, given the high-risk combination of the twins’ condition and Aida’s age.

The majority of conjoined twins die in utero, said Dr. Gary Hartman, a Packard pediatric surgeon who has separated four sets of conjoined twins at Stanford. About half of conjoined twins who survive birth die in their first 24 hours due to various medical complications associated with sharing organs, he said.

Identical twin pregnancies occur when a single fertilized egg cleaves into two embryos within the first 12 days after conception. In cases of conjoined twins, that cleaving occurs more than 12 days after conception and the egg does not split completely, allowing the embryonic layers to develop into separate but connected organs and structures.

The first well-known case of conjoined twinning occurred in 1811 in Siam (now Thailand), leading to the now outdated phrase, “Siamese twins.” While successful separation surgeries for conjoined twins were once rare, advancements in medical technology over the past several decades have made the procedure more survivable.

Conjoined twins can be attached in a number of ways: at the head, the chest, the lower back, the pelvis, or elsewhere. The more vital organs the two infants share, the lower the odds for successful separation. To date, approximately 250 successful separations in which one or both twins have survived have been recorded worldwide, according to the American Pediatric Surgical Association.

Erika and Eva are thoraco-abdominal ischiopagus twins who mostly share a lower body. They have their own brains, their own hearts and mostly their own digestive systems.

“Everything from the diaphragm up looks pretty good,” Hartman said. “That’s what’s gotten them as far as they’ve gotten.”

For much of Aida’s pregnancy, imaging could not reveal where the twins were conjoined or what they did and did not share. Her physicians stayed positive, but were careful not to be too hopeful, she said.

During that time, Aida felt anxious about her own health and the survival of her girls. She slipped into depressive funks. She prayed. She searched the Web for information about conjoined twins, often bringing up disturbing imagery that made her feel worse.

“I felt like I was alone,” she said. “I blamed myself. I wondered what they would look like, and what would happen.”

Back in Antelope, the Sandoval family feared for Aida. They hesitated to tell their large and tight-knit Mexican American family about the disconcerting news. Art, a stocky man with a warm smile beneath a well-kept mustache, continued his work as a heavy equipment mechanic, needing the health benefits to handle the mounting medical bills. He visited his wife on weekends.

Aniza Sandoval, the oldest child at 25, fights back tears when she thinks about that summer, and how scared she was for her mother and for her sisters-to-be.

“She’s so strong,” she said of Aida. “(My parents) could have given up, but they didn’t. I admire that.”

As the twins’ September due date approached, Aida met with a spiritual healer to help mentally prepare for the birth. Though Art had already chosen “Erika” as one of the twins’ names, Aida decided the second one should be called “Eva” – a name she felt signified life.

“We just hoped everyone would be OK,” Art said. “We knew it would be an emotional ride, and we had to deal with it.”

An early delivery

At the hospital, a team of maternal-fetal medicine specialists, nurse practitioners, genetic counselors, patient care coordinators and medical social workers helped ready Aida for the complicated birth.

Her high blood pressure, exacerbated from carrying twins, made it likely that the girls would need to be delivered early. If they were not able to breathe on their own, resuscitation could be extremely difficult given the positioning of their bodies, said Dr. Susan Hintz, medical director of the fetal and pregnancy health program at Packard.

Another medical team was assembled to prepare for the actual delivery. They spent weeks practicing different scenarios using a specially designed conjoined infant mannequin. Equipment was color-coded for each twin to avoid mix-ups.

“Dozens and dozens of people were involved,” Hintz said. “The overriding feeling that all of us have in a complex medical care team is the privilege of being part of this family’s journey and having the opportunity to help take care of these really precious girls.”

Delivered by cesarean section on Aug. 10 at 33 weeks gestational age, Erika and Eva – weighing a combined 5.5 pounds – struggled for air for their first few minutes, requiring assistance and supplemental oxygen. Both eventually managed to breathe without tubes.

The twins’ first seven months in the hospital were spent undergoing CT scans, echocardiograms and other types of imaging to try to distinguish their internal connections, as well as help figure out the best way to feed them.

Aida, who was staying at a nearby Ronald McDonald house, learned how to safely hold and position the twins (because of their skeletal structure only one can be upright at a time) and how to fill and program the timer on their feeding tubes. Though the girls’ anatomy did not prevent them from taking a bottle, they experienced oral aversion, a common condition among premature babies who don’t start sucking immediately after birth.

In February 2015, the twins were released from the hospital, still on a feeding tube but doing well. Without a car seat for conjoined infants, Art and Aida took their girls home in a special seat-belt-equipped car bed.

Over the past few months, the couple acquired a modified stroller, a larger vehicle to accommodate the car bed and a sewing machine so that Aida can combine baby onesies into double outfits. By searching online, Aida has found other parents of conjoined twins, including a Utah mother of two now-separated girls, who posted videos of how she sewed her baby daughters’ clothes.

Aida tends to dress the girls in contrasting colors – a testament to their individual personalities. Eva, the larger of the two twins, sports a mostly toothless smile during much of her waking life, especially when meeting new people. Erika takes longer to warm up to strangers, staring pensively while Eva wriggles and writhes. They often reach for one another, when not distracted with a toy or fidgeting with their third leg.

The first year of mothering the twins has been a mix of joys and challenges, Aida said. With surgery on the horizon, life is about to change again.

“Now I’ve gotten used to my girls in the sense that I can be comfortable going places with them,” she said, referencing a recent birthday shopping spree for the twins at the mall. “Now we’re going to the next stage in our journey, and the challenges that we are going to face together ... that’s going to be hard on them, and on me.”

Separation anxiety

Aida’s care pre- and post-delivery in Palo Alto was only a fraction of the mounting expenses for Erika and Eva, who saw multiple specialists during their early months.

Neither the family nor hospital officials said they knew the total of the twins’ medical bills. So far, the Sandovals said the fees largely have been covered by Art’s health care insurance through his work, with additional help from Medi-Cal.

Aida travels to Palo Alto every few weeks, either with Art or one of her children, to have the girls weighed and discuss any problems with Dr. Hartman. He and the care team are focused on getting the twins to put on weight. They appear to share at least part of a gastrointestinal tract, and it’s not clear if they’re absorbing nutrition equally, which doctors say may be a factor in their size difference.

In the fall, Dr. Hartman plans to do an exploratory procedure to better understand what they share internally. The separation surgery likely will not take place until 2016, sometime before the twins’ second birthdays.

The complex, 10-to-20-hour surgery will require tissue expanders and skin grafting. “The butterfly” – or their third leg – likely will play an important part in their transformation, providing extra skin to patch the areas that remain exposed once their tiny bodies are finally separated.

While Hartman feels confident that the girls will survive the procedure, he’s unsure if they’ll ever walk, or even stand. Each girl will have one natural leg, and will likely require the assistance of prosthetic limbs. Their fused liver can be split into a functional organ for each child, the doctor said.

For now, the family is adjusting to having the twins at home. Emilio Sandoval, who graduated from Antelope High School in June and joined the U.S. Army, said he’s become comfortable with his baby sisters.

“Holding them at first, I was a little scared,” he said before leaving for boot camp. “I thought maybe I would break them.”

With Emilio stationed in Oklahoma and oldest daughter Aniza now living in Los Angeles, Esmeralda Sandoval is the only sibling living close. She said she would like to help raise her sisters with the same strength and grace her parents have shown.

“My mom has always taught us to love who you are and what you have to offer,” Esmeralda said. “I want to be that second support to show them there is nothing wrong with who they are going to grow up to be, whatever is going to happen.”

Conjoined Twins

▪ Conjoined twins occur when a single egg starts to divide into two, but stops. Conjoined twins are genetically identical, which means they’re always the same sex.

▪ Extremely rare, conjoined twins occur roughly once in every 200,000 live births. Roughly 70 percent are girls.

▪ About 40 to 60 percent of conjoined pregnancies result in stillbirths.

▪ There are about a dozen different types of conjoined twins. Two of the most common are thoracopagus (conjoined at the upper torso) and omphalopagus (conjoined from breastbone to waist)

▪ Perhaps the most famous set of conjoined twins was Eng and Chang Bunker, born in Siam (now Thailand) in 1811. Joined at the lower chest, the brothers were exhibited worldwide in circus shows before settling in the United States, where they married two sisters and had more than 20 children. They were farmers in North Carolina, where they lived until 1874. Never separated, they died within hours of each other at age 62.

Source: University of Maryland Medical Center

How to help

To help cover the Sandoval twins’ ongoing medical expenses, a donation account has been set up through Chase Bank. Donation checks can be sent to: Sandoval Twins Medical Donation Account, P.O. Box 1992, North Highlands, CA 95660.

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