Conjoined twins, born locked in embrace, successfully separated
Complicated surgery is a first in Michigan
DETROIT – Sarabeth and Amelia Irwin were locked in an embrace when they were born at 11:06 a.m. on June 11, 2019.
Conjoined from their chests to their bellies, the identical twins’ arms wrapped around each another as they were carefully lifted from their mother’s womb at Michigan Medicine’s Von Voigtlander Women’s Hospital in Ann Arbor, said Dr. Marcie Treadwell, director of Michigan Medicine’s Fetal Diagnosis and Treatment Center.
About 14 months later, the twins returned to Ann Arbor, where they underwent an 11-hour surgery Aug. 5 at C.S. Mott Children’s Hospital, becoming the first known set of conjoined twins to be successfully separated in Michigan.
“They’re so rare,” said Treadwell, explaining that just 1 in 100,000 to 1 in 250,000 pregnancies involve conjoined twins. Few survive delivery, and even fewer live long enough to be discharged from the hospital and go home, like Sarabeth and Amelia did.
Two teams of surgeons – one for each girl – and more than a dozen other medical staff spent months planning how they would safely separate Sarabeth and Amelia, giving them a chance at independent lives.
“Other than taking our word for it, you would almost never know that they were conjoined,” said their father, Phil Irwin, just a few weeks after the first-of-its-kind surgery.
Their mom, Alyson Irwin, smiled, and said, “They’re doing great.”
But neither Alyson nor Phil could ever have dreamed they would be able to say that about their twins when they first discovered they were conjoined in February 2019.
A concerning ultrasound
Something about the pregnancy was different, but Alyson, 33, couldn’t pinpoint what it was.
The Irwins looked forward to the 20-week prenatal appointment. They were eager to see ultrasound images of their growing baby. They agreed they wouldn’t find out the gender, and instead wanted to let it be a surprise at delivery.
None of their previous prenatal doctor’s visits gave them any inkling that they were having twins or that they might be conjoined.
The ultrasound technician moved the wand around on Alyson’s belly, but then quickly excused herself to get the doctor.
“It may have been five minutes, but it seemed like forever,” before the doctor came into the room, Phil said. “That’s when we found out they were conjoined.”
Their doctor referred them to a highrisk obstetrician, and within 24 hours the Irwins were in Ann Arbor, meeting with Treadwell at Michigan Medicine.
“I tend to always try to be hopeful, but I also have to be realistic,” said Treadwell, who also is a professor of obstetrics and gynecology at the University of Michigan. “Giving people false hope is not particularly helpful for anyone.”
Another ultrasound and a later MRI showed that the twins each had their own arms and legs. The girls were joined at the chest and abdomen, Treadwell said.
Absorbing the news was hard for the Irwins.
But soon after, glimmers of hope began to shine through.
Dr. George Mychaliska, a pediatric and fetal surgeon at Mott, met the Irwins in March 2019.
“Even at that time, we had pretty good prenatal imaging, which indicated that they really had all separate organs, except a liver was fused in the midline,” Mychaliska explained.
“I told them separation of the two babies seemed possible but much more evaluation and planning would be required . ... I didn’t want to be too optimistic because this was (going to be) a really long journey for us. We had never done it before. But I do remember being very hopeful with the family, that it’s something that certainly was possible.”
It was hope the couple desperately needed.
Not an ordinary C-section
Although the plan was to perform a cesarean section between 35 and 36 weeks, Treadwell said the babies were showing signs of distress at 34 weeks.
Amelia and Sarabeth shared an umbilical cord, which Treadwell said, had “a lot of different blood vessels in it, more than what you normally would see.”
A 3D model of the twins was made to simulate the delivery, and a team of doctors, nurses and other staff was assembled.
“As you can imagine there’s challenges with taking care of two babies that are attached. Where do you put IVs? And how do you help them breathe if they need help breathing? Those kinds of things,” Treadwell said.
The models allowed Treadwell and her team to accurately estimate how big the incision in Alyson’s abdomen would have to be.
June 11, 2019, dawned, and the Irwins made a 45-minute drive to Ann Arbor to finally meet their baby girls, knowing that as many as 60% of conjoined twins don’t survive delivery, and even fewer live long enough to be discharged from the hospital.
Amelia and Sarabeth defied those odds.
“I remember them briefly putting the girls on my chest. It was very sweet and special being able to hold them and see them for the first time,” Alyson said. “It was just very surreal. There was so much adrenaline from everything that led up to that point.”
The girls weighed a healthy 9 pounds, 4.5 ounces together – more than 4.5 pounds apiece.
Although the outlook was exceptionally good given the odds, Sarabeth and Amelia remained hospitalized for 85 days.
Planning for separation
Dr. Steven Kasten, pediatric plastic surgeon at Mott, began working with the Irwins soon after the twins were born to plan how they would create enough skin to be able to cover the abdomens of both girls once they were separated.
The girls underwent an initial surgery to add tissue expanders on both sides of their bodies.
Just as they had been used to prepare for Sarabeth and Amelia’s delivery, the hospital’s radiology team worked with bioengineers to create 3D models of the twins and their livers and other body structures to help the surgeons simulate what would happen in the operating room.
Mychaliska led the surgical team on Aug. 5, along with Kasten and pediatric heart surgeon Dr. Richard Ohye for a procedure that they estimated could take as long as 16 hours, Phil said.
Sarabeth and Amelia shared a chest wall, but each twin had her own diaphragm muscles, said Mychaliska. They had one small, shared sternum bone that would have to be divided, and separate livers that were fused, he explained. Although the twins had individual hearts, they shared an outer membrane or protective sack, called the pericardium.
Both girls needed an artificial sternum, which the cardiothoracic team built out of titanium bars to stabilize their chests, Kasten said. Gore-Tex fabric was used to place a patch over the holes in the pericardium around each of their hearts.
The first incision was made at 11:19 a.m., Mychaliska said. And by 1:11 p.m., they had been separated and placed at opposite ends of the operating room table while surgeons began reconstructing their chests and abdomens.
Sarabeth came home from the hospital first, in late August. Amelia followed soon after.
Six weeks post surgery, Amelia and Sarabeth have matching scars that run down the center of their chests, forming a question-mark-like shape over their bellies that is likely to fade but might never completely disappear. They may need additional surgeries as they grow and their bodies developed, but doctors are optimistic that Sarabeth and Amelia will grow up to be just like any other kids.
“Their outlook is really quite good,” Mychaliska said, “especially with their parents. Their parents are really special people. They got the perfect parents for being conjoined twins. Not only because of their commitment, love and support, but because they’re just very innovative and optimistic people. I think that really made a big difference.”