BIRMINGHAM, Ala. (AP) — As expectant mom Stephanie Castle awaited her eight-week ultrasound, the technician casually asked her how she was doing.
Stephanie, pregnant with what the Birmingham couple thought would be their fourth child, replied, “I had a dream last night that I was having conjoined twins, so as long as that isn’t the case, I’ll be OK.”
“We were both like, ‘Really? Wow. Let’s hope that won’t be the case,’’ said Stephanie’s husband, Dwight, pastor of missions at Redeemer Community Church in Avondale. “About five minutes later, we learned there were two heartbeats and that kind of began the journey. We were shocked, to put it lightly.”
Not long after, the couple learned not only were they having twins, but indeed they are conjoined. The baby girls, Susannah Jane and Elizabeth Florence, are connected at their chest, down to their belly buttons.
Conjoined twins are extraordinarily rare. According to Children’s Hospital of Philadelphia, which has successfully separated 25 pairs of conjoined twins since 1957, conjoined twins occur once in every 50,000 to 60,000 births. About 70% of conjoined twins are female, and most are stillborn.
The Castles, who have three other children under the age of 7, will leave Birmingham in two weeks to head to Philadelphia to prepare for their birth of their daughters. The past months have been a roller-coaster of emotions, best and worst-case scenarios, prayers, fears, tears, and hope.
“I think in a lot of ways, God has sort of been preparing us for this for a while,’’ Dwight said. “We’ve grown certainly in awareness of how challenging it’s going to be and knowing we probably don’t know the half of it. But we have an increasing faith in the Lord that He is so clearly over this and providing for us.”
The Crestwood couple found out in September that they were expecting. They already have two sons, ages 6 and 3, and a 2-year-old daughter. “We were on the fence about whether to go for a fourth child. We had a lot of different things we had walked through in the prior years that had been difficult with our family growth and planning,” Dwight said. “We had a miscarriage. We had some infertility. We were foster parents, and we had some hard, difficult foster situations. But we said, ‘Ok, let’s try for four,’ and then we found out we had five. That was very overwhelming.”
It was early November when the Castles had that prognostic ultrasound. Within a couple of minutes, the tech summoned the doctor, ’‘which is never a great sign,’’ Dwight said.
The doctor explained to them that the babies were in the same amniotic sac which is a very rare type of twins and fraught with potential complications for the pregnancy. Conjoined twins were a very unlikely, but possible outcome. It was more likely that they could lose one or both of the babies in a variety of ways. “We left that appointment reeling with a lot to consider,’′ he said.
One month later, they had their first appointment with maternal fetal specialists at UAB and it was then confirmed the twins were indeed conjoined. Susannah and Elizabeth have separate heads, separate brains and separate limbs. The big question was if they had separate hearts because that would determine whether or not there was a path toward separation.
“The good news is they do. They’re extremely close They’re literally touching each other,’′ Dwight said. “They share the lining around the heart – the pericardium – but that’s not preventative for separation.”
The girls also share a liver and probably a portion of their small intestines. The liver is the only organ in the human body that regenerates so doctors will basically split the liver in two, with a half going to each girl.
There was a concern at one point that Elizabeth had major heart disease or defect, which would have significantly complicated the separation possibility. “That was a huge question mark,’′ Dwight said.
The Castles were sent to Children’s Hospital of Philadelphia, which is one of the leading hospitals in the world for dealing with conjoined twins. They went three weeks ago for a consultation and learned that Elizabeth doesn’t have a heart defect. It’s basically not formed in a way that is normal for most, but it is fully functional.
“It’s an anatomical anomaly – they had to go look in a 1970s textbook to identify what this was because he’s only seen one other time in his career and that was 30 or 40 years ago,’′ Dwight said. “That was a huge answer to prayer for us and they gave us the news that they believed they were separable and would like to do that.”