The Hard Blessing of Conjoined Twins – Sarah Eekhoff Zylstra

Dwight and Stephanie Castle’s twin babies don’t sleep at the same time. When one is resting, the other is moving around, kicking and wiggling and babbling.

The problem is, the girls are attached—from chest to belly button. The awake baby is constantly bumping her sleeping sister.

“It’s hard,” said Dwight, pastor of missions at Redeemer Community Church in Birmingham. But in the list of the girls’ difficulties, this one barely merits a mention. Susannah and Elizabeth share a liver, part of their small intestines and pancreases, and the lining around their hearts. They haven’t left the NICU of the Philadelphia hospital where they were born five months ago.

Elizabeth and Susannah Castle were born at 10:06 am on April 22 / Courtesy of the Castles

Conjoined twins are exceptionally rare, and most are stillborn. Since 1957, the Children’s Hospital of Philadelphia has successfully separated just 25 pairs. (For comparison, 123 conjoined twins have been referred to the hospital since 1995.)

The Castles are praying that Susannah and Elizabeth will be the 26th pair. They’ve recently been cleared for a separation surgery, but before that, they’re spending three months having their skin expanded so they won’t need grafts. That involves a silicone implant under their skin, which introduces all manner of infectious possibilities. After the separation, Elizabeth will need open-heart surgery to repair a sizable hole in her heart.

On top of that, Dwight and Stephanie are worried about their three older children—ages 7, 4, and 3. Before the twins were born, Dwight and Stephanie thought she would give birth in Philadelphia and then return home to Birmingham until the separation. Instead, the Castles spent two months away from their older kids before realizing they’d have to temporarily relocate everyone to Pennsylvania for the year.

“Don’t do that—don’t leave your kids for two months,” Dwight advises. They’re still dealing with the emotional consequences, including tears when their parents leave them. And that happens a lot, because COVID precautions keep the older children from the NICU. Dwight and Stephanie are constantly choosing between children. Thus far, they’ve spent less than an hour as a family of seven.

One week old / Courtesy of the Castles

Their situation is so unusual it can seem to others like they’re living in a movie. In the last six months, their story has been told in dozens of news articles, a successful GoFundMe, and a Facebook page followed by almost 20,000 people.

“People will say to us, ‘You’re so strong,’ ‘You’re great parents,’ or ‘God’s chosen the right people for this,’” Dwight said. “They mean well, but no—we are so utterly incapable of handling this. It’s like throwing someone in the Mariana Trench in the ocean and saying, ‘Wow—you’re such a good swimmer.’

“The only way we have breath in our lungs or hope in our hearts, the only way we’re upright, is because of the Lord’s kindness.”

TGC asked Dwight and Stephanie how God prepared them for this moment, how they’ve experienced the church’s care, and whether the suffering is making their hearts harder or softer. (Since Stephanie was holding the girls, who began fussing partway through the interview, most of the answers came from Dwight.)

Your situation is so rare it seems surreal. How did God get you ready for this?

Dwight: Looking back, we can see a few pivotal times in our marriage and our family’s development that did prepare us in large part for this time.

One month old / Courtesy of the Castles

After our first son was born, we had a difficult miscarriage—a second-trimester loss. It led to a time of infertility, and we began exploring adoption and foster care. We hit some dead ends in the adoption process, so we ended up fostering a little boy. We had him almost the first year of his life before he went back to live with his mother. We had a good relationship and were able to stay actively involved in his life for the next two years. Unfortunately, some things concerned us and it ended up getting messy—she cut us out of his life and we haven’t seen him now for two years. He’s coming up on his fifth birthday and we still pray for him and wish we could be part of his life.

Stephanie: Before that, we’d always been able to see God’s goodness in every situation. That was the first time we had a hard time—how is this good? That’s still unanswered. Trusting God even when you can’t see the good yet—or might never see the good—definitely prepared us for the news that we were having conjoined twins. I also had a dream, the night before our ultrasound, that we were having conjoined twins. It wasn’t a comfort back then, but now I see it as evidence that nothing is a surprise to the Lord. He was showing me that he was going before us.

Ever since the prenatal diagnosis, you’ve had to do a lot of difficult waiting—for the birth, for the evaluations, and now for the surgery. How do you keep hanging onto God’s goodness in the worry and the waiting?

Dwight: For the majority of the time when you’re in a dark valley, it’s hard to see God. But it has been easy to see how God’s people have been with us. We believe the church is the body of Christ, and they have been incessantly faithful.

The girls on May 31, 2021, their due date / Courtesy of the Castles

They’ve spoken truth to us, about the heart of the Lord for us. They’ve believed in God’s goodness for us when we couldn’t. When Stephanie was pregnant, they picked our kids up from school, provided meals, did our laundry, cheered our kids at soccer games, prayed for us. I have some cousins here in Philadelphia, and when we moved here, their churches picked it up. They have prayed for us in their services, brought us meals, held special prayer meetings for us, and given us two cars to use.

Christians around the world have sent us money. We’ve been blessed with free haircuts, free photography sessions for our family, the use of a condo at just the right time. The week the girls had their most recent surgery, our older kids started school and we needed to move from the condo to a rental house. Six guys from our home church in Birmingham flew here and spent two days moving us and helping us with the kids.

So it’s been very clear—even though the Lord has not allowed this situation to go easily, he has had his hand on us.

Tim Keller always says that suffering will either harden you and make you bitter, or it will soften you and draw you closer to the Lord. Do you think that’s true?

Dwight: I think it’s doing both—hardening and softening me. I trust God’s going to soften the hard parts.

It’s like Frodo when he gets back from his journey. He has a sobriety about life. The suffering has changed him. It’s for the good—the world has benefited—but he’s not as happy-go-lucky or able to find joy in all the silly things in life. I feel that—I don’t feel as light as a person. I see a lot of the frivolous nature of other things. But I’ve also never been so compassionate to people who are suffering.

What have you learned spiritually through all of this?

Dwight: We have been grounded in the knowledge that God is with us and that we are waiting on him. We have memorized Psalm 27 together and put it on the wall of our NICU room. And we’ll have moments of clarity that remind us of these truths.

Practicing sitting up and head control / Courtesy of the Castles

One crazy example—Elizabeth has a sizable hole in her heart and will need open-heart surgery after the girls are separated. Because of that hole, her heart was working really hard, and she was going to need a stopgap surgery. We were very concerned about it, since she’s so young and since they’d both have to go under anesthesia.

The Friday before the surgery, we asked the cardiologist to do another echocardiogram to see if anything had changed. Stephanie texted our community to pray. The doctor called us a few hours later and said, “I don’t know what to say, but her body is already doing what the surgery was going to do.”

God answered that prayer miraculously. But we also prayed that the girls wouldn’t be conjoined in utero, and he didn’t do that. We’re learning that we don’t know the rhythms of how God answers prayers—why he sometimes says yes and sometimes says no.

In C. S. Lewis’s Screwtape Letters, the demon Screwtape writes: “Our cause is never more in danger than when a human, no longer desiring, but still intending, to do our Enemy’s will, looks round upon a universe from which every trace of him seems to have vanished, and asks why he has been forsaken, and still obeys.”

We don’t know if God’s will for us is to suffer a major loss or to show a beautiful miraculous work. Either way, we trust in him.

Even that is a gift. All I bring to the table is complete brokenness and weakness. In my weakness, his power is made perfect. He gives grace for the moment.

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