A double portion

The timeline has touched two winters now. Stephanie Castle notes this while zipping her puffer jacket to her chin. Later, she’ll detail the difficult spring, summer, and fall that came between, but for now it’s the white stuff outside the main entrance to Children’s Hospital of Philadelphia (CHOP) that has the Southerner’s attention. “Snow was on the ground when I got here last year,” she said, shaking her head. “Now it’s on the ground again.”

But changing seasons have nothing on the changing circumstances Castle and her husband, Dwight, have encountered since April 22, the day the couple’s youngest daughters—conjoined twins—arrived on the scene. That’s when their calendar filled with surgeries and setbacks. Stress. Even now, with the girls nearing their first birthday, Dwight says it feels like their family is running a marathon, only this one comes with a difficult announcement about Mile 20: “We learn it’s actually an ultra-marathon.”

The 37-year-old pastor smiles as he says it, but whenever he or his soft-spoken wife describe what life has been like on the hospital front with babies Elizabeth and Susannah, or what life has been like on the home front with their other three children, they don’t use superlative degree adjectives without cause. The highs and lows have been extreme.

Having conjoined twins, Dwight and Stephanie admit after sharing a silent gaze, is the hardest thing they’ve ever done.

BIRMINGHAM, ALA., SEES about two inches of snow on a good year, but the trade-off is camellia blooms with showy color and below-freezing staying power. They’re common in historic neighborhoods like Avondale, where Dwight Castle in 2008 helped plant Redeemer Community Church. He was fresh from a missionary stint in Northern Ireland. Stephanie was teaching at an inner-city Christian school. They met, married, and decided to start a family. After three pregnancies brought them two sons and a daughter, another brought them the grief of a second-trimester miscarriage. They worked up the courage to try again in the fall of 2020.

Eight weeks later, an ultrasound revealed the couple had succeeded times two, then a 12-week appointment confirmed the rare likelihood of conceiving conjoined twins—one in 50,000 births—had become the Castles’ 100 percent reality. Stunned, they left the maternal-fetal medicine specialist’s office at University of Alabama at Birmingham Hospital (UAB) and stumbled to the Target parking lot where they’d left their car.

“We didn’t say anything for the longest time,” Dwight remembers. “We just wept.”

Discontinuing the pregnancy was never an option for the Castles, “not even a thought in their head,” but Dwight admits feeling hopeless: “I was trying to believe the goodness of God in this. I believe in His power, His ability to save, His sovereignty over everything. But how was this good?”

Stephanie also struggled to believe God was doing a good thing. When she confessed her doubts to a fellow church member, the friend told her it was okay. She would believe for her.

“And that’s how it’s been,” Stephanie, 36, explains, tears filling her eyes. “When we’re weak, others around us are strong.”

The big question at first was how were the girls connected? And really, what organs did they share? Ultrasounds showed them positioned facing each other and joined in their midsection, a thoraco-omphalopagus connection, the most common for conjoined twins. But doctors weren’t sure if Elizabeth and Susannah had separate hearts, because they appeared to be touching against each other, potentially sharing a lining.

Whatever the outcome, the babies would need specialized care Birmingham couldn’t offer. The Castles chose CHOP, a facility that’s garnered conjoined twin referrals from all over the world, but even there only a small number of patients get a shot at surgical separation. Since 1957, only 28 pairs.

Dr. C. Everett Koop was the hospital’s chief surgeon during the pioneering years of those operations, long before he became the nation’s most recognizable surgeon general. In 1974, Koop successfully separated 13-month-old twins Clara and Alta Rodriguez, flown in from a farm village in the Dominican Republic. They were joined in much the same way as the Castle twins, and they were supported in their travels in a similar way too—by a church.

Members of Redeemer in April waved goodbye to the Castles as they headed to Philadelphia for a scheduled C-section. Doctors wanted to deliver the twins at 34 weeks, with a plan to return to UAB for further care. But despite a safe arrival, the babies ended up staying in Philadelphia at the children’s hospital. Indefinitely.

Two days after their birth, however, Dwight Castle made a quick trip south. He wanted to attend a memorial service.

In a strange irony, another Birmingham pastor and his wife had discovered on Nov. 11 that they were also having conjoined twins. That’s the same day doctors gave the Castles their news, at the same medical practice. The couples got to know each other through a flurry of texts and calls, then, in a final twist, doctors delivered the four babies on the same day. The twin boys, born in Birmingham, lived six hours.

“We had walked together through something unique, and now we were living through different outcomes,” Dwight explains. “We celebrated and mourned together what had happened in all of our lives. It was a powerful, holy moment.”

ELIZABETH CASTLE and her twin sister, Susannah, spent their first 100 days in CHOP’s neonatal intensive care unit. Dwight and Stephanie did, too, and as former foster parents, they were intentionally hands-on. They wanted to meet their babies’ needs so healthy attachments could form.

But being with the babies meant being away from their other kids. By the time the couple realized a temporary family relocation to Philadelphia was in order, two months had passed. Too long, according to Dwight, who says separation anxiety—clinging, screaming, shrieking—later showed up even as they tried to leave their children for an hour of Sunday school.

Morris was 6, just learning to read. Three-year-old Judah could draw an impressive bison. Emmet, barely 2, slept with a picture of her new sisters under her pillow. Juggling their needs with the twins’ one-step-forward, two-steps-back progression was a delicate dance, a waltz that included surprise moves like the suspected hole in Elizabeth’s heart and feeding troubles that required both girls to get nasogastric tubes, devices they have still today. Then in July, staff figured out part of Elizabeth’s nutritional intake was landing with Susannah. A direct feeding line, a central catheter, was necessary to solve the problem.

Dwight says they never felt they could let their guard down: “They would tell us, ‘We think the hearts are separate,’ so we would have that day to rejoice, and then they’d say, ‘But we’re not sure they’re each functioning correctly.’ So maybe it’s our personalities, or maybe it’s sin, but even the good news always seemed uncertain.”

Stephanie in August taped the words of Psalm 27 on walls in the twins’ new hospital room. The couple clung to verse 13 and the hope of “looking upon the goodness of the Lord in the land of the living.”

“We certainly didn’t think it was a guarantee that the girls would live or be able to be separated or be healthy or whole or anything like that,” Dwight stresses, “but we wanted to believe that somehow the Lord was going to use our experience for good, and not just in eternity, but here now. Some days, it was hard.”

Jeff Heine, a pastor at Redeemer, believes that kind of vulnerability has given his friends a platform: “From the very beginning, they expressed they weren’t strong enough for this, but Jesus is. In the last year, I’ve seen every possible emotion from the Castles—fear, confusion, joy, hopefulness, exhaustion, anger—but they’ve had a humble and quiet trust in the Lord.”

Many others have seen those emotions too, or at least read about them. The Castles in April started a Facebook page, and followers have cheered them through intubations and extubations, and rejoiced over a September post announcing the twins could move forward toward separation surgery. One video of the twins garnered more than 5 million views.

Meanwhile, the Castle clan lived in two hotels and a couple of condos before settling into a New Jersey split level for the school year. Pastor Heine and six other elders flew up to do the heavy lifting during the last move. “It reminded me of youth ministry, when you’d have 15 of us on a roof and four times as many nails going into the roof as needed,” Heine laughs. “It wasn’t the most efficient thing. It was about showing support and love for them.”

Redeemer allowed Dwight to continue from Philadelphia his job as missions pastor. He’s made several trips back to attend services and meet with five staff members he directs.

By fall, the twins’ medical team deemed them ready for tissue expander surgery. A plastic surgeon inserted balloon-like devices beneath the skin of their abdomens to prepare for separation, and three months later the expanders had done their work. Dwight and Stephanie on Dec. 10 saw their conjoined twins for the last time. Susannah had just started saying “dada.”

The surgery took 14 hours—longer than expected. When Dr. Alan Flake came to update the Castles, he told them to grab a chair. They had a lot to talk about.

“He spent the next 45 minutes trying to describe and draw what he had just done in separating our girls, really saving their lives,” Dwight remembers. The connections between the babies’ small intestines and associated organs were more complicated than anticipated. “He told us it went well overall, but what he had to do to save them would have lasting effects.”

The shellshock continued when Dwight and Stephanie saw their daughters. “I just wasn’t prepared,” Stephanie admits. “They were so swollen and lifeless. They looked like corpses.” Before they left for the night, the Castles got another caution. The twins wouldn’t be out of the woods for at least two weeks.

THE SEPARATION SURGERY, in effect, ended the twins’ rare bond and the Castles’ rare parenting situation. Even though Elizabeth faces extended hospitalization, doctors have released Susannah. Stephanie says the 9-month old’s first day out in the world was memorable: “You should have seen her reaction to cars.”

Susannah came home to the rental house in Cherry Hill, N.J., where construction paper covered half of the Castles’ kitchen table. Judah, now 4, was writing his name on cards for his classmates. All 21 of them.

“Twenty-one?” Stephanie questioned her mother, René McKnight, who provided a rundown of the day.

Together, McKnight and Dwight’s mother tag-teamed care of their grandchildren while Dwight and Stephanie spent the bulk of their days at CHOP. McKnight says the toughest part was the second Philly residence. “I mean, 38 stairs every time we went into that condo. Just a killer,” she laughs.

Taking on the role of mom, maid, and mood adjuster wasn’t easy for the retiree, who admits she needed two days to recover each time she returned to Birmingham. But she wasn’t alone. One morning McKnight found her daughter up early, a Bible stretched across her lap and a breast pump running. Stephanie was fast asleep. “Her heart was to be with the Lord, but her body was depleted,” McKnight says.

Exhaustion continues to be part of the package. Even with Susannah at home, Stephanie was operating on little sleep. That’s because the baby had feeding issues during the night—a lot of them. They got her checked out at CHOP while visiting Elizabeth, and by midafternoon Susannah was lying on a big pillow in the family room, squirming and smiling. Beautiful. Dwight used a test strip to check the pH levels of her stomach acids, then waved the results toward Stephanie. She started the feed line.

The tempo picked up as Judah came down the stairs and Morris came in from school. Emmet passed through like a fairy and asked a question of no one in particular. “When will Elizabeth come home?”

Soon, came the answer. Maybe by spring.

Dwight points out their children have learned things most don’t so early: “That life isn’t about them. That some categories of life have greater value and meaning.”

Over the din—and concerns about missed work, future surgeries, school transfers, and hospital bills—he counted his blessings. “Everyone experiences hardship in life. It’s just the reality of living in this broken world. I think this year has allowed us to testify to the Lord’s faithfulness in the normal hard things.”

And, he adds, to see the good. Like the twins’ long-term prognosis.

Both girls will have more surgeries over time, and they’ll need to transition to normal foods and have NG tubes removed, but the family will do all that in Birmingham. Yes, in Birmingham. They flew home Feb. 27, and Elizabeth, with Dwight beside her, followed by medical transport to Children’s Hospital of Alabama, where doctors expect her to stay a few weeks.