'No limitations': Formerly conjoined twins from Fargo turn 8 years old; parents hope June surgery was the last
MANDAN - Belle Carlsen crouches down at the bottom of the stairs, puts her ponytailed head to the floor and kicks her legs into the air to perform a handstand against the wall.
Within seconds, Abby Carlsen is copying her, bracing her body upside-down against the couch.
It’s gymnastics time for the Carlsen twins.
“From 6 to 9. At our house. Every night,” their father, Jesse Carlsen, deadpanned.
Watching the bubbly blonde tornadoes as they roughhouse and twist their wiry frames into awkward positions, it’s easy to forget that the girls were born joined at the chest and abdomen eight years ago and surgically separated before they were 6 months old. Or that, until last summer, Belle still had a gap in her sternum, her heart covered only by skin.
A lot has changed for the Carlsen family since they moved from Fargo to Mandan four years ago. But one of the more recent major changes may mean the most in the long term.
No more surgeries.
No more worrying about an unprotected heart.
“No limitations,” said their mother, Amy Carlsen.
Spotlight fades, twins shine
Inside the Carlsens’ home, a bluish-gray two-story nestled in the rolling prairie far away from the lights and buzz of Bismarck-Mandan, the family of four gathers around the dinner table for a routine meal: homemade chicken noodle soup with buttered whole-grain bread.
The twins, shifting often in their chairs, aren’t sold on the main course.
“Just a little bit,” Abby said as her mom filled her bowl.
“Abby, you’re going to try it. I didn’t put any onions in it,” Amy said.
After a few bites, Belle uses her spoon to pick out a piece of something stringy, carefully sliding it up the side of the bowl like it was a biohazard.
“Mom, I didn’t want an onion!” she said.
Amy shrugs off the complaint. Such is life with two second-graders.
A few feet away, the family’s newest addition, an American bulldog named Allie, sits in her kennel, alert to visitors but surprisingly calm for being just 18 months old. Her muscular build and square head give her a guard-dog look — an effective one, judging by the packages that postal carriers leave halfway up the driveway. But Jesse insists “she’s more afraid of you than you are of her.”
The large pet is just one of the luxuries afforded by the family’s spacious surroundings about 10 miles outside Mandan, a big change from city life in Fargo.
They moved to Mandan so that Jesse, whose job as a surveyor for the North Dakota Department of Transportation had him working long days away from the girls in Fargo, could take a job with the DOT’s bridges division and work four-day weeks. The move also cut roughly in half the distance from his parents in Sidney, Mont.
Amy, 33, who was a licensed practical nurse in Fargo, has since earned her four-year nursing degree and now works for Sanford Health in Mandan.
Meanwhile, the spotlight that shined so brightly on the family as they prepared for and recovered from the well-documented surgery that separated the twins on May 12, 2006, has faded.
Jesse, 36, still marvels that, at the height of the media hoopla, a woman with her children stopped them in Walmart and asked to have their picture taken with the family.
While the Carlsens have embraced their new home, they said they still miss Fargo.
“That’s like a family of 100,000. I loved it there. Everywhere you went, people would ask, ‘How are the girls?’ “ Jesse said.
They’re seldom recognized in Bismarck-Mandan, though people often remember the family’s story when they learn who they are. And when they visit Fargo-Moorhead, people are more likely to recognize Jesse than the twins, Amy said.
But make no mistake: The girls remain the stars of this show.
Closing the gap
After dinner, Belle hops onto the bench in front of a gray Yahama electric keyboard and begins to pluck away at an instantly recognizable version of “Santa Claus is Coming to Town.”
The piano lesson from earlier that afternoon is already paying off.
“That must be her new song,” Amy said.
“You’ve never played that before?” Jesse asked. Belle shakes her head no, and dad shakes his head in proud disbelief.
Impressive as their musical and physical skills may be, it’s the twins’ energy and sense of humor that shine through in their personalities.
Just a few minutes into a family interview, Belle runs to her room, returns with a small notebook and pencil, stands next to a reporter and proceeds to conduct her own mock interview.
“They crack me up,” Amy said.
The freedom to laugh and enjoy life without medical worries is palpable here, a far cry from the twins’ first six months of life.
They were born by Caesarean section on Nov. 29, 2005, and spent the 75 days before their surgery at Mayo Eugenio Litta Children’s Hospital in Rochester, Minn., gaining weight and having their skin slowly stretched in preparation for the complex procedure. They remained in the intensive care unit for 10 days after surgery and finally arrived home in Fargo on June 6, 2006. The community embraced the family, donating more than $50,000 to defray medical bills and other expenses.
When the family left Fargo in 2009, Belle was still wearing shirts with special plastic inserts to protect her heart. But as she grew older, she didn’t want to wear the brace, so Jesse made a vest for her the past two years, going so far as to call the manufacturer of Kevlar to inquire about materials that would be sleek and inconspicuous.
Now, Belle is vest-free. Last June, surgeons at Mayo Clinic sewed three layers of Gore-Tex across her sternum to provide a protective covering for her heart. The leathery material will harden over time.
Said Amy: “They’re hoping that …”
“… it’s her last surgery,” Jesse said, finishing the sentence.
Bond remains strong
While the girls no longer share parts of their anatomy, their sibling bond remains strong.
When Belle misbehaved in kindergarten, earning her a yellow mark on the behavior calendar, it was Abby who emerged from school crying when their mother picked them up.
“I said, ‘What’s wrong?’ “ Amy said, recalling Abby’s tearful response. “ ‘Belle got a yellow!’ “
Belle, as she has been since their early years, is slightly taller than Abby by about half an inch and a pound heavier at 40 pounds. Her smile reveals one front tooth missing with one starting to grow in, while Abby is missing one front tooth but the other has yet to fall out.
This is the first year the twins are in different classes at school, by their own choice. Amy said she worried they would be left out of each other’s activities, but as it’s turned out, if one is invited to a birthday party or other event, the other usually is, too.
“They must come as a pair,” she joked.
The twins are exercising their independence in other ways, too.
Belle now prefers her full name, Isabelle, as opposed to Belle or the other nickname her friends have given her, Izzy. Abby still goes by Abby, though who knows for how much longer.
“I want to be called A-b-b-i,” she said.
“You can’t change it now,” her dad replied.
The twins have come a long way, and their story underscoring the wonders of modern medicine hasn’t been forgotten in Rochester, where they underwent separation surgery. In September, a camera crew from the Mayo Clinic spent two days at home with the family, shooting footage for a video that will be used during the clinic’s 150th anniversary celebration next year, Jesse said.
Abby and Belle turned 8 years old Friday, after spending Thanksgiving Day with their grandparents from Sidney.
To avoid conflicts with the holiday weekend, their birthday party has been scheduled for next Sunday.
It will have a My Little Pony theme.
Each of the twins is inviting six friends.
“It’s going to be crazy,” Jesse said.