Chelsea Torres’s dreams were nightmares. Pregnant with twins, the 23-year-old spent most nights awake to avoid distressing thoughts: nightmares about the twins not making it through delivery, of doctors delivering twin boys with four legs, one trunk and two heads — twins she knew weren’t hers.
At 37 weeks along, she and her husband, Nick, weren’t even talking about the delivery. The night before Chelsea’s C-section, they played cards with their moms. The next morning, on the car ride to Texas Children’s Pavilion for Women, they made nervous small talk about bad drivers and complained about morning rush-hour traffic. Anything to get their minds off what lay ahead.
In Chelsea’s case, her nightmares about losing her twins on day one were not all that unrealistic — that was the scary part.
She was carrying conjoined twins — Callie and Carter — and from the start there had always been the chance that something could go wrong, at any moment and especially at the final one: delivery day. Forty to 60 percent of conjoined twins arrive stillborn, and roughly 35 percent survive only one day, according to data from the University of Maryland Medical Center.
Chelsea and Nick, 23, had carried this knowledge with them ever since finding out Chelsea was pregnant with conjoined twin girls at eight weeks. In fact, the doctor who discovered this had predicted they were almost certainly bound to die in utero, as many do. Yet that day felt so distant by now. Since then, the couple had uprooted their lives and driven 1,700 miles from their home in Blackfoot, Idaho, to find more expert doctors in Houston. They had quit their jobs — Nick, as a manager at the Family Dollar, and Chelsea, doing her final veterinary externship before completing vet school. And when they got here, they had lived with their three-year-old son, Jaysin, first in the Ronald McDonald House, then in a cramped trailer that Jaysin called “the bus house,” and then finally in a cozy furnished apartment thanks to help from a local Baptist church. The only money they had for rent was from savings, from gracious donations from friends and family and even from strangers, fascinated by the prospect of a pair of twins conjoined, literally, at the hip.
Now, though, driving to the hospital, Chelsea almost wished she could turn around. In a way, she almost didn’t want to give birth to Callie and Carter, preferring to go on carrying them in her womb. She knew they would be safer there, both from any medical errors or complicated surgeries and from the probing gazes of all those fascinated strangers out there, eagerly awaiting the news of the twins’ birth.
But soon Chelsea was on the operating table, with Nick and a nurse by her side, clutching her hands. She could feel the doctors slicing into her, a strange sensation that came without pain, and her hands were shaking so intensely that the nurse asked if she was cold. She asked Chelsea, “What are you most afraid of? The operation or the outcome?”
The phenomenon of conjoined twins is incredibly rare, with the odds ranging from 1 in 50,000 to 1 in 200,000 births.
It’s unknown exactly how conjoined twins occur. But the most widely accepted theory is that an embryo on the brink of splitting in two — the way identical twins are created — simply never finishes splitting. From there, two fused fetuses continue growing in the womb, resulting in conjoined twins.
The most common types are those conjoined at the chest or the abdomen — called thoracopagus and omphalopagus twins respectively — making up about 75 percent of cases, according to the Children’s Hospital of Philadelphia. Rarer types include craniopagus twins — those connected at the head, about 2 percent — and ischiopagus, those who share a pelvis, making up fewer than 5 percent of cases. The Torres twins are a rare combination: As omphalo-ischiopagus twins, they have two legs, one pelvis, and two separate torsos that face each other and that are fused at the diaphragm. Their spines never touch.
“This type is more complicated and rare because of how they’re conjoined,” said Dr. Jonathan Davies (pronounced Davis), a neonatologist at Texas Children’s and the lead NICU doctor overseeing the Torres twins. “It all goes back to when the early embryo was splitting. When that happens, the effects on the internal organs are so varied that even if we look at similar omphalo-ischiopagus twins, they have different internal anatomy. This is where it gets even more tricky, because we really have to individualize our care to these twins based on what we find.”
Unlike Dr. Davies, the first doctors Chelsea and Nick saw were convinced the twins would die. In fact, the very first two doctors, unable to detect a heartbeat, didn’t even believe Chelsea was pregnant. They told her it was a hoax pregnancy. The third doctor in Boise, Idaho, detected the conjoined twins — but he told the couple they should consider abortion. He warned them what could lie ahead: They might have to uproot their lives to fight for the babies’ survival, only for the twins to die in utero and the sacrifices to be for nothing. His prognosis: The twins would die at 11 weeks — and if not then, some time later.
He asked them, did they really understand what they were getting into?
They decided to wait. Eleven weeks came and went, and then 20 weeks, and Callie and Carter were still alive and healthy. The couple, ruling out abortion as an option, instead had been searching for specialists across the country, eventually settling on Texas Children’s. In 2015, the hospital had successfully separated a pair of omphalopagus conjoined twins from Lubbock, the Mata twins, in a 26-hour, first-of-its-kind surgery performed by 26 clinicians. The success story appealed to Nick and Chelsea.
Yet even as they met Dr. Davies, who had worked on the Mata twins and had made the Torres couple believe their twins had a fighting chance, the Boise doctor’s prognosis was hard to forget.
“It’s on my mind every day. Constantly, every day,” Chelsea said in October, 23 weeks along, during an interview in their old trailer home. “Some days are better than others. Sometimes I just break down in the middle of Toys“R”Us. Sometimes I play different scenarios in my head, thinking what if they’re not gonna be here, and we did all of this — not for nothing, but we tried our best and it still didn’t happen.”
But as the babies grew, the outlook improved. Prenatal imaging showed the twins did not appear to share any vital organs, which increased their chances of survival. Still, as the Torres couple and the doctors knew, nothing could be certain. Throughout the fall, Chelsea, who was trained in veterinary radiology, avoided looking at the echocardiogram, fearing she might see something herself that indicated irregularities with either Callie or Carter’s heart. But no defects were ever revealed — at any point throughout her pregnancy.
And that, in and of itself, is rare too.
For Dave and Jenni Ezell, who gave birth to conjoined twin boys in Dallas in 2013, complications sprouted up on what seemed like every hospital visit.
They, too, were told by an early doctor unfamiliar with the complexities of conjoined twins that it would be best to abort. “He said, ‘In my professional opinion, they have virtually no chance to survive,’” Dave recalled. “That was his message to us.” The Ezells took that professional opinion seriously, and in fact had even scheduled an appointment at an abortion clinic. Yet when they arrived, it was actually the abortion-clinic doctor who got the Ezells rethinking their decision. He asked them whether they had heard about the doctors at Dallas’s Medical City who specialized in conjoined twins. He gave them some names.
“We found when we made it to Dallas doctors who did know a lot about conjoined twins, and they said, ‘Hey, you’ve got options here,’” Dave said. “‘We’ve seen this before. You have a shot. Don’t just end it now.’”
The Ezell twins — classified as thoraco-omphalopagus twins conjoined at the chest and fused at the liver — faced an uphill battle. Doctors discovered that one had a tiny hole in his heart, which could be nothing, or could be life-threatening. The other had a problem with his vertebrae, making it likely he would have scoliosis and, possibly, would not be able to walk. One had enlarged ventricles in his brain — which could be nothing, or could be hydrocephaly, a buildup of fluid causing, possibly, life-threatening brain defects. And at one point doctors discovered a large, fluid-filled sac right between the babies — and didn’t know what it was.
“Not knowing was the hardest part,” Jenni said. “Not knowing if they would survive. Not knowing if they would make it to delivery. Not knowing if they would be able to support themselves once they were delivered.”
“There’s this big, scary cloud hanging over your head,” Dave added, “where you say, We’re gonna get to a point where we have to talk about separation, and there’s a lot of risk involved. But that’s not the stuff you worry about day to day. You worry about little things, like enlarged ventricles and spinal defects and this fluid-filled sac that you don’t understand.”
Delivery day caught the Ezells by surprise: Just one day before her scheduled C-section, Jenni went into labor. And despite all the doctors’ prenatal concerns, Emmett and Owen came out crying and pink-faced, breathing on their own.
In the ensuing weeks, the hospital became like a second home, the Ezells said — and as they prepared for separation surgery, the doctors became a second family.
While Chelsea and Nick made nervous small talk in the operating room, Davies and his team of specialized NICU nurses were busy preparing for the worst.
In a small simulation room, roughly a dozen nurses were working to save the artificial lives of two mannequin babies fused together with medical tape. The babies’ organs were electronic, connected to a simulation machine controlled by another nurse, who would lower one baby’s vital signs and watch as the nurses began chest compressions. Each baby had a strip of orange and purple medical tape on its forehead, corresponding to the orange and purple tape on each screen displaying their vitals. For now, these colors would be their names.
“Orange — the heart rate’s down,” Dr. Davies announced, observing closely from behind the small hospital bed. “We’re starting positive pressure ventilation.”
“I’m ready to take over compressions,” a nurse said.
Her steady count — “one and two and three” — repeated like a metronome in an orchestra of medical machines, the steady oxygen pump its bass line. At least eight hands worked on the babies at once — communication constant — as the nurses delivered epinephrine and a dose of saline to the unresponsive plastic baby, their poised composure a testament to their months of preparation. In a matter of minutes, the babies were stable.
“Our job is to be ready to think about all the things that could pop up, and be ready and prepare for anything that could happen as much as we can,” Davies said. “Nothing is simple with conjoined twins.”
Throughout Chelsea’s pregnancy, 20 to 30 doctors and their teams of nurses packed into the conference room to review any new discoveries, usually once per week, and had run through various simulation procedures, including the delivery. For Davies, among the most complicated challenges was having to make educated guesses about the twins’ anatomy. The MRIs appeared to show two stomachs, for example — but it was unclear whether the stomachs were connected or just close together. And beyond the vital organs above the diaphragm, it was the same way for most others.
“We have a lot of information from prenatal imaging, and we generally know their anatomy, but a lot of times you don’t know what it means,” Davies said. “We can see the organs, but how they act, we don’t know.”
For Chelsea, that prenatal guessing game was “like throwing your kid in traffic and hoping he makes it past eight lanes okay.”
Back on the operating table, the nurse was telling a panicking Chelsea to breathe — do it for the babies, the nurse told her. Chelsea couldn’t look up. There was a light there, and she could see in the reflection all the doctors with their hands inside her. More than a dozen clinicians, led by prenatal surgeon Dr. Alireza Shamshirsaz, were in the room, Nick remembered. They were waiting to hear the word “scoring” — what the nurses would yell out as the twins were pulled from the womb, to prepare to immediately evaluate their color, their heartbeat and their breathing.
Finally, amid light conversations about favorite foods and rush-hour car accidents, “scoring” rang out — and Nick and Chelsea heard the first squeals. It was 11:39 a.m. “Hearing them cry, it was a wave of relief,” Chelsea said.
At first Carter had mild trouble breathing, and the NICU nurses pumped some room air in through her mouth to help her catch up. Before the twins were whisked away to make sure they remained stable, Chelsea was able to hold them, rubbing her cheek up against theirs for the first time. They seemed to recognize her, she said. “I gave them little pep talks,” Chelsea said. “I told Carter, ‘Keep breathing for your sister.’”
She wouldn’t be allowed to leave her hospital bed for 12 hours, until midnight, when the anesthesia was expected to fully wear off. While she recovered, Nick lingered in the NICU as doctors updated him about the girls’ well-being. He was so engrossed in watching them, he said, that he could not even remember what the doctors were saying. They swirled around him with their clipboards and medical utensils the way time fast-forwards and the world spins past a motionless main character in movies. He sat by Callie and Carter’s bedside, playing with their fingers and toes — before realizing he had been there for hours. Chelsea had been waiting for him to return. “Time didn’t exist for me at that point in my life,” he said. “It just stopped.”
The public’s fascination with conjoined twins dates back to at least the early 19th century, when the original Siamese twins, Chang and Eng Bunker, were born in 1811 in Siam (now Thailand).
When they were 18, their mother sold them to a British sea captain for their first exhibition as anatomical curiosities in America and England. They were conjoined by only a flap of skin the size of a forearm, between their abdomens. And as they gained popularity, various renowned British surgeons sought to study them, performing minor experiments on them that asked questions such as, If you poke one twin in his sleep, will the other wake up? They ultimately concluded that the twins shared a nervous system and a network of blood vessels — suggesting that, should one die, the other would need to be immediately severed.
After amassing a large fortune traveling voluntarily across the United States in circuses and various exhibitions, including a short stint with P.T. Barnum, Chang and Eng ultimately settled down with two sisters named Sarah and Adelaide Yates in Wilkesboro, North Carolina. On a farm, they built two houses for each wife and family — fathering 21 children between them over the years — and alternated between the houses every three days. They would die there in 1874, not long after Chang suffered a stroke. Chang died in his sleep, yet before Eng could be cut free, he died with him.
They were buried in North Carolina, and their grave site remains a tourist attraction.
“If there is a sad aspect to Chang and Eng’s story,” wrote Professor Holly E. Martin in The Journal of American Culture, “it is not their lives or even their terrifying deaths, but the fact that even in death they can never stop being in the eye of the spectator.”
While Chang and Eng’s story is perhaps the most heavily documented in history, documentation of conjoined twins dates back more than 1,000 years. Beyond Neolithic statues and ancient Central American ceramics or cave drawings from at least A.D. 300, the earliest written medical account of conjoined twins begins at A.D. 945, when surgeons in the Byzantine-era Constantinople attempted, but failed, to separate two Armenian twins conjoined at the chest. More than a century later, in 1100, Mary and Eliza Chulkhurst — often called the Biddenden Maids — were born in Biddenden, England, and they are believed to be the first pair of conjoined twins to survive well into adulthood. When Mary fell ill and died in 1134, according to English tradition, doctors tried to separate Eliza to save her life. But she refused, saying, “As we came together, we will also go together.” She died six hours later.
Today many of the twins who remain conjoined would be unlikely to survive separation surgery.
The longest-living pair of craniopagus conjoined twins, joined at the head, are Lori and George Schappell, who are now 55 years old. George, who is transgender and was born Dori, launched a successful career as a country-western singer under the name Reba, with his sister holding the mike for him while he played guitar onstage. Not unlike the way conjoined twins of earlier centuries had been ostracized, Lori and George’s parents believed their physical deformity equated to a mental disability. They were institutionalized for the first 24 years of their lives, until Pennsylvania’s former First Lady fought to have them removed so they could live freely.
Yet even if they were born today, it might still be unlikely they would be good candidates for separation surgery given the threat to their brains. Because even as medicine has advanced, separation surgery for conjoined twins of any kind still poses serious risks.
Dave and Jenni Ezell didn’t have a choice. Six weeks after Emmett and Owen were born, their kidneys started failing. Doctors assured the couple that, if the twins weren’t separated, they would almost certainly die. Yet the odds for a successful surgery were anything but optimistic: Based on their research, lead surgeons told the couple that the exact separation surgery Emmett and Owen would need had been performed only eight times in history, to the best of their knowledge. In only one case did both babies survive. In half of them, both died.
“We were trying to stay hopeful and trying to stay positive, and trying to think of the best possible outcome,” Dave said. “But the fear and the doubt and the unknown, it just sticks to you. It just doesn’t go away.”
The surgery lasted roughly nine hours. Jenni, a self-described introvert, spent most of the day working on a 1,000-piece puzzle in a private room the hospital had set up for them. Dave, the extrovert, distracted himself by telling stories with his family. A nurse in the operating room would call once an hour, leading Dave and Jenni to leap for the phone on its first ring to hear the latest update: They made it through the liver; the boys are doing amazing; we’re almost through the surgery, the nurse would say.
Then came the call at 3:24 p.m.
“She said, ‘The boys are on separate beds,’” Jenni remembered. “I just bawled.”
Emmett and Owen are now three years old, with bleached-blond hair and the kind of big, blue eyes made for Gerber commercials. They love Curious George and Mickey Mouse and “flip out” whenever Dave and Jenni turn on their favorite, Robin Hood. They love the family dog. And they love preschool, where they learned their colors and how to count to ten. They’re like any other three-year-old, the Ezells say — except for the fact that, well, they don’t eat. As doctors continue to evaluate their gastrointestinal systems, the boys still use a J-tube, which feeds right into their intestines.
Doctors are not certain whether that will ever change. The twins also suffer from chronic lung disease, given that their lungs were underdeveloped when they were born, and, since they once shared a diaphragm, they don’t have the support or strength to cough. Nor do they have abdominal muscles — those are shifted to the lateral. All of which means that a simple respiratory infection or a mild strain of the flu can be deadly. This past winter, Dave and Jenni pulled them out of preschool to avoid flu season, yet the twins still ended up catching bad colds, which sent them to the hospital for three weeks.
Surgeries still lie ahead too. Owen still has that small hole in his heart, and doctors are unsure for now if it will heal on its own or whether they may need to intervene. Emmett, as doctors feared, does suffer from scoliosis, and will need surgery once he gets older. As for those enlarged ventricles in Emmett’s brain, they turned out to be “agenesis of the corpus callosum,” a rare birth defect in which the band of white brain matter that connects the two brain hemispheres never develops. The defect can cause varying degrees of developmental delays, though so far Jenni and Dave say it does not appear to have had a profound effect on their son.
“Some of our anxiety about their future has been alleviated,” Dave said, “because I feel like, at this point, the surgeries that we’re talking about are no longer about life or death. I feel like we’re past that point of feeling like we’re gonna lose them, and we’re thinking about how can we improve their future.”
The topic of separation surgery isn’t one that Chelsea and Nick are ready to address. Earlier in January they discussed the prospect of separation with an orthopedic surgeon, who assured them that it was in fact possible. While complications would arise since the twins share a pelvis, the surgeon said that, in cases where people with bone cancer need life-saving surgery to remove affected bones, prosthetic legs have worked out, and for babies or toddlers, it’s easier to adjust.
Still, Nick and Chelsea haven’t talked about it since then, and prefer not to even think about it. They want to watch the twins grow, taking things one day at a time. And if it comes down to surgery, and it proves too risky, Nick said they’ve grown more and more comfortable with the possibility that maybe the twins can’t be separated, and maybe that’s fine.
“It’s still a few chapters ahead of us,” Nick said. “At the very beginning, we were like, of course we’ll get them separated. But as we gained more general knowledge about the whole situation and the complications, we thought, if they have to stay conjoined, we’re okay with that.”
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The twins have continued to remain stable and healthy, slowly learning how to feed on their own as doctors evaluate their gastrointestinal systems, monitoring how much nutrition they can take in before their stomachs — which are in fact separate but close together — get too full. Otherwise, Dr. Davies said, the twins have impressed the whole medical team with their perpetual smooth sailing. “They’re breathing on their own and peeing and pooping,” he said, “and that’s basically all we ask of babies.”
Since the twins were born, Nick and Chelsea have seemed to make the hospital into their second home too, sometimes skipping meals just so they can get there more quickly — “we’re learning the snacks we can eat in the hospital hallway so we can eat as we go,” Nick said. They say they can already see the twins’ personalities beginning to bloom.
Carter is a little more aggressive than Callie, always appearing a little hungrier and more eager for attention. Callie is more sensitive. She doesn’t like to be touched, and she cries more, which at times leads her sister to look at her befuddled. When they sleep, Carter squirms, and Callie bunches her hands up to her chin.
Sometimes, Nick and Chelsea said, Carter reaches out and lightly touches Callie on her forehead, making sure her sister is still there.