"Do you love your sister?" It's a question Jesse and Amy Carlsen of Fargo never tire of asking their daughters, identical twins Abbigail (Abby) and Isabelle (Belle). Put the question to Abby, she races to her sister and places her head on Belle's chest. Ask Belle, and she rests her head on Abby. The sweet expression of sibling love has become one of the girls' favorite games, along with a synchronized pacifier exchange and endless rounds of copycatting that Amy refers to as "monkey see, monkey do."
For most parents, these toddler games wouldn't warrant an entry in the baby book. But for Jesse and Amy, even normal milestones still feel like miracles.
When Abby and Belle were born conjoined in November 2005, the Carlsens weren't sure their daughters would ever crawl, walk or blow out the candles on their first birthday cakes. But the couple was determined to do whatever it took to ensure their daughters would experience every first. That determination would lead the Carlsens to Mayo Clinic, where a dedicated team of physicians, nurses and allied health staff would work together to give the Carlsens what they most wanted for their children: a future.
The Carlsens' medical odyssey began nine weeks into Amy's pregnancy, when an ultrasound revealed the possibility that she was carrying conjoined twins. Two weeks later, a second ultrasound left no doubt. The couple's daughters were joined at the chest and abdomen, sharing a liver, bile ducts and intestines.
Research suggests that conjoined twins develop in as many as one in 50,000 pregnancies, but they account for only one in 250,000 live births. Almost half of conjoined twins are stillborn; fewer than half of those born alive survive long enough to be candidates for separation surgery. In spite of such bleak statistics, Jesse and Amy were optimistic. "Much of the situation was out of our hands, but we knew we could at least remain positive," says Jesse.
On November 29, 2005, their optimism was rewarded when Abbigail Lynn and Isabelle Anne arrived via planned C-section at Abbott Northwestern Hospital in Minneapolis. They were healthy babies, just as Jesse and Amy had prayed they would be. The couple hoped the rest of their prayers would be answered as perfectly.
With the girls' birth behind them, Jesse and Amy began searching for the right team to separate Abby and Belle. They had already spoken with staff at two facilities when Jesse called Mayo Clinic in February 2006. After speaking with Christopher Moir, M.D., a pediatric surgeon, the Carlsens decided to take Abby and Belle to Mayo for evaluation.
"Dr. Moir told me Mayo had the best children's liver surgeon, which was important because the girls shared a liver," says Jesse. Something else Dr. Moir said impressed the Carlsens: a decade earlier, he had led a team that separated two sets of conjoined twins. If the Carlsens decided to bring Abby and Belle to Mayo for treatment, many of the same people would be providing the girls' care. "We were impressed by Dr. Moir's confidence and Mayo's experience," says Jesse. With only 250 sets of conjoined twins successfully separated, that experience was a considerable advantage.
The Carlsens packed their bags, planning to spend a week in Rochester meeting with doctors. But soon after they walked through the doors of Saint Marys Hospital, the Carlsens realized their stay in Rochester would be a much longer one.
"Everyone was prepared for us," says Jesse. "It was obvious Mayo had all of its ducks in a row. We knew we'd found the place where our girls would get the kind of care they deserved." That care was provided by a cast of 70 people, including plastic, pediatric, bile duct, cardiac and transplant surgeons; pediatric anesthesiologists; radiologists; nurses; dieticians; intensive care specialists; physical therapists; and child life specialists.
While it was the largest team ever assembled at Mayo Clinic, in many respects the Carlsens' care was business as usual.
"We assemble a team for each of our patients," says Dr. Moir. "This was a much larger group than most, but the way we worked together was no different than if we had been caring for a child with a hernia." "When caring for any patient, I figure out what the defect is and then figure out how to fix it," says Ricky Clay, M.D., a Mayo Clinic plastic surgeon specializing in pediatrics. "The approach was the same with Abby and Belle. We used the same techniques we use every day — we just combined them in a slightly different fashion."
As the team's leader, Dr. Moir kept the Carlsens informed of plans for their daughters' care. "Dr. Moir made sure we knew everything the care team knew," says Jesse. "Because we aren't doctors, he sometimes had to explain things more than once and it took a lot of his time. But at Mayo, time isn't the most important thing — the patients are the most important thing. The staff made us feel like our girls were the most important thing in the world to them."
On May 10, 2006, the Carlsens invited everyone involved in Abby and Belle's care to a healing service, which included the blessing and anointing of Dr. Moir's hands. Two days later, those hands — backed by months of prayer and preparation — would hold the Carlsens' world.
As Jesse and Amy placed their daughters on an operating table on the morning of surgery, their hearts were full of equal parts of hope and fear. If everything went as planned, the next time they saw Abby and Belle it would be as two separate little girls. But if something went wrong, they could lose one — or even both — of their daughters.
The odds were on their side. Dr. Moir originally told the Carlsens there was a 30 percent chance one or both girls would not survive the surgery. But after months of studying images of the girls' anatomy, Dr. Moir felt the risk was less than 5 percent. "By the day of surgery, we had separated Abby and Belle hundreds of times in our heads," he explains. "We knew every aspect of their anatomy, and had discussed every possible option for separating them. We were ready."
At 4:28 p.m., after approximately eight hours of surgery, the final piece of tissue connecting Abby and Belle was cut. A few hours later, Jesse and Amy saw Abby alone for the first time. Not long after, they saw Belle. "They looked so good, the way they were supposed to," says Jesse. "It was like they were free."
After just three and a half weeks of recovery, the Carlsens returned to their home in Fargo. "
As happy as we were to be going home, we were really sad to leave Mayo," says Jesse. "It was hard to leave the people behind." So he and Amy were thrilled when some surprise guests showed up at Abby and Belle's first birthday party: Dr. Moir and his sons, twins Spencer and Logan.
"I believe there was a reason we were led to Mayo Clinic," says Jesse. "Our girls got amazing care from amazing people. We couldn't have asked for anything more."