A serious birth defect is not stopping a sixyear-old girl from living her life to the fullest.
IN A classroom full of girls in tutus and tights, Mira Fencl blends right in ... a plie, arms in first position, followed by delicate steps to the side.
Like the rest of the students, the girl follows the direction of her dance instructor, right down to the final bow.
This is when an onlooker might spot a clue that Mira differs from the other dozen or so other kids at Steppin’ Out dance studio. A Minnie Mouse backpack, strapped to her shoulders, comes into view when she bends forward. From that pack, a thin tube snakes up to her chest.
The contents of the whimsical backpack are keeping the young girl alive.
Mira has short bowel syndrome, and her doctors say it will shorten her life. For most of her life, her parents have shielded her from the germs that can take her life. But their daughter, they decided, deserved to have moments of a happy childhood.
And that tube, barely visible under her leotard, is clearly not on Mira’s mind when she skips off to admire one of the small dogs that hang out in the lounge at the studio.
Mira’s family and close friends, many of whom recently celebrated her sixth birthday, describe her life as an ongoing miracle.
On a pause between practice, Mira is more focused on talking about dance, which is fairly new to her life, than discussing her medical issues.
Her favourite part of the class is “the ballet parts,” she says, bright blue veins contrasting against her pale arms under the studio lights.
Meghan Fencl, Mira’s mother, has done her best to protect her daughter from infection. But Mira is eager, at six, to take part in the activities other young girls embrace, and she’s ready to make friends.
In dance class, Fencl sees her daughter holding hands with other girls and skipping to the beat of music. Mira seems content but, Fencl says, Mira’s condition can turn on a dime.
“We know, unfortunately, the end result,” Fencl said, when discussing her acceptance that her daughter will not live long. “It just is, so we’ve kind of accepted it.”
At the dance studio, Michelle Uptegrove, Mira’s teacher and a family friend, agrees it’s been a good day for her student.
“Lots of energy today,” Uptegrove says.
Before heading into dance class, Uptegrove reminds Mira to put on a pair of tap shoes as well as a layer of hand sanitiser. Inside her backpack, Mira carries a pump and an IV tube attached to a 2-litre fluid bag for her nutritional needs. The bag is nearly empty.
Mira was born with her small and large intestines outside of her body. She has gastroschisis, a birth defect that affects nearly 2,000 infants born each year in the United States, according to the Centers for Disease Control and Prevention.
Fencl was 10 weeks pregnant with Mira when she learned through her first ultrasound that her baby would be born with the defect. What Mira’s parents and doctors saw appeared to be the shape of a flower outside the baby’s belly. The condition is typically treated with surgery to place the organs back inside the body cavity.
“In her case, we were told the entire pregnancy that’s what to expect. That’s not what happened at all,” said Fencl.
Mira lost 87% of her intestines, which had been exposed and became necrotic. Because of the condition, she was diagnosed with short bowel syndrome.
The cause of gastroschisis remains unknown, and there is no cure for short bowel syndrome.
As a result, the six-year-old receives treatment through total parenteral nutrition, a feeding method designed to bypass the gastrointestinal tract. The nutritional fluids are pumped through a tube connected to her heart, reaching the bloodstream. It helps her function.
But the girl’s mother says it also hurts her daughter’s liver. The young girl also has chronic kidney disease and hyperinsulinemia. And with a weakened immune system, Mira’s family says they must be extra careful to protect their daughter from getting sick.
“If you and I get a fever, we have a flu, we have a virus. If she gets a fever, she could have a blood infection that goes and causes sepsis throughout her entire body because that line she has is connected to her heart,” Fencl said.
She said there were times Mira’s mother was told her daughter “wasn’t going to make it.”
On a good day, Mira appears happy and healthy.
But Fencl says people don’t see her daughter’s day-to-day life. Mira undergoes severe fatigue and vomits stomach acid each day. She spends most of her time at her home receiving care from a full-time nurse. Despite it all, Fencl says her daughter is still here. Slowly but surely, Fencl says, her daughter is stepping out into the world.
“We were keeping her away from other children,” she said. “We weren’t letting her go into the children’s classroom at church. We weren’t letting her go into the play area at the mall because of all of the germs. But, she was lonely and she was miserable.”
Uptegrove, a life-skills teacher, is Mira’s home teacher. She came across an opportunity when she was discussing Mira with Phyllis Balagna, a school board member and owner of Steppin’ Out Dance Studio. Balagna invited the six-year-old to attend her “Broadway Babies” dance class on Monday nights, where children learn tap dance and ballet.
“The way she’s been dancing, it’s like she’s been here all year,” Balagna said. “She’s really smart. Really bright. We love making things happen for children like Mira.” – The Kansas City Star/ Tribune News Service
Mira (second from left) was born with her intestines outside her body, and taking part in dance lesson is a highlight for her. — TNS