“When one goes one way, the other goes the opposite direction,” says Shellie. “When they were toddlers, I never sat down unless they were sleeping! I wouldn’t have it any other way, though.”
That’s because Amelia and Allison were born as conjoined twins and separated as babies at Children’s Hospital of Philadelphia (CHOP). To Shellie and Greg, the twins are a miracle.
A rare diagnosis
During a routine ultrasound 20 weeks into her pregnancy, Shellie found out she was expecting twins. But the real shock came next – the baby girls appeared to be connected to each other (conjoined).
Conjoined twins are very rare, occurring roughly once in every 50,000 births. The family, from Adams, N.Y., was immediately referred to Children’s Hospital, where more than 20 pairs of conjoined twins had been separated since 1957.
There, they met Holly Hedrick, MD, a pediatric general, thoracic and fetal surgeon who would eventually lead the surgical team that separated their babies, and underwent extensive prenatal testing to establish a detailed picture of how the twins were connected.
After the evaluation, the medical team determined that the girls had a thoraco-omphalopagus connection, which means they were joined at the lower chest and abdomen. The twins shared their chest wall, diaphragm, pericardium and liver, but their hearts were completely separate. This made them excellent candidates for separation.
Preparation for separation
As the due date approached, the family moved to the Ronald McDonald House in Philadelphia where Shellie’s pregnancy could be monitored closely. Allison and Amelia were delivered via planned C-section on March 1, 2012, in CHOP’s Garbose Family Special Delivery Unit, the world’s first birthing unit dedicated to mothers carrying babies with known birth defects.
“They were absolutely gorgeous,” Shellie recalls.
Allison and Amelia spent their first few months of life inside Children’s Hospital, where they received specialized care as they grew stronger and prepared for the surgery that would separate them.
One of the many steps required to prepare the twins for separation was to insert skin expanders to increase the skin surface available to cover exposed tissue after surgery. Months before the separation surgery, David Low, MD, a plastic surgeon, inserted the expanders in each infant. The surgical team also needed to plan and practice the many complex steps that would be required during the separation procedure.
One becomes two
On November 7, 2012, when Amelia and Allison were 8 months old, they underwent a marathon surgery. The seven-hour procedure was tightly orchestrated, with more than 40 physicians, nurses, and other medical staff from general surgery, plastic and reconstructive surgery, cardiac surgery, anesthesiology, radiology and neonatology participating.
“The moment when one becomes two is very, very dramatic,” says Hedrick.
“At the end,” remembers Shellie, “the surgeons came out and told us they were separate. The weight of the world was off our shoulders. The first time seeing them as two separate girls was really the most amazing feeling.”
Allison and Amelia recovered in the Newborn/Infant Intensive Care Unit (N/IICU) where they were closely monitored by neonatologists, pulmonologists, nutritionists, developmental pediatricians and other specialists.
On Dec. 20, they were introduced to the world at a press conference to celebrate the next phase in their lives. Allison went home in time for Christmas, and Amelia shortly after. For both girls, that homecoming was their first time outside of the hospital.
Healing and growing as separated twins
The girls required some special care, including feeding tubes, during their first few months at home. But by the end of the summer, the feeding tubes were gone and both girls were up walking and running.
For Greg and Shellie, the sense of amazement they felt in those early days hasn’t worn off as they continue to watch their daughters grow, each with her own unique personality.
The girls are now in preschool. Allison loves animals and wants to be a vet when she grows up. Amelia loves to catch and throw a ball, and is good at kicking a soccer ball. Allison would eat pizza for every meal if she could, even breakfast, while Amelia loves homemade macaroni and cheese and vegetables, especially broccoli and asparagus.
For show-and-tell at their preschool, the girls recently decided to share pictures of when they were connected.
“It’s something we’ve talked about with them, something that makes them special in a good way,” says Shellie. “It was their idea to share. They decided together and asked us for pictures.”
Their classmates were impressed, and in the days that followed Shellie found herself retelling the family’s amazing story to other parents who wanted to know more.
Shellie and Greg bring the girls back to CHOP for periodic check-ins with their medical team, though the visits are getting less frequent. While they may not need CHOP as much anymore, the family will always treasure what the entire medical team did for them.
Published January 2017