Mighty Girl is getting mighty big.
Last summer, Alexandra Mae Van Kirk, fondly called Mighty Girl by her family, was one of the smallest babies in the world to undergo a heart procedure to clear a blocked artery.
At the time, she weighed only 2 pounds and her heart was about the size of a walnut.
The procedure demanded precision, and congenital cardiologist Joseph Vettukattil, MD, MBBS, who was recruited from England to become chief of pediatric cardiology and co-director of the Congenital Heart Center at Helen DeVos Children’s Hospital almost two years ago, was up for the task.
He threaded a catheter with an inflatable balloon into her tiny artery and expanded the balloon to widen the opening for improved blood flow.
Prior to Alexandra’s July procedure, the internationally known heart specialist had performed 300 pulmonary balloon valvuloplasties in the last two decades–but none on children weighing less than 4 pounds.
Today, Alexandra clocks in at a healthy 12 pounds. She’s growing in stature and in personality.
“She’s doing great,” reports Alexandra’s mom, Heidi. “Looking back at the pictures–she came home at 4 pounds, 2 ounces–there’s just such a dramatic difference how much bigger she is.”
Alexandra, whom her parents also call Sasha, is a calm but curious baby.
On a recent weeknight, while the family dined on savory pork chops, Mighty Girl sat in her swing in the family’s southeast Grand Rapids home, intently watching anything that moved–including her 2-year-old sister, Josephine.
“She loves to just take things in,” Heidi says. “The only things that get her upset are a wet diaper and getting her nose wiped. She hates getting her nose wiped. She goes from perfectly fine to screaming and turning purple with even a little swipe of the nose. She just hates it.”
Besides her family, the love of Alexandra’s life is an orange-and-white pacifier that Spectrum Health provided.
Heidi said it’s the only style with which her daughter has bonded.
“She hates the ones we buy at the store,” Heidi says. “I’m about to make an emergency call to the hospital begging for more.”
Alexandra’s early life was nowhere near tranquil.
When Heidi was 30 weeks along, gynecologist Ruth Brandt, MD, of Grand Rapids Women’s Health, told her the fetus had only a 35 percent chance of making it to a live birth.
“So much goes through your head,” Heidi recalls. “What’s your prayer? Of course we want our daughter to make it, but if making it means her life is going to be painful and terrible, we don’t want that. We were learning the hard lessons of putting our child in God’s hands before we’ve had a chance to hold her yet ourselves.”
Despite her congenital heart defect, Alexandra was active in utero–hence, her nickname, Mighty Girl. Her kicks were as concentrated as an Australian soccer star’s.
“She was a mover from the time I could feel her, moving constantly,” Heidi says.
Mighty Girl has a few more procedures on the docket, including another balloon for pulmonary stenosis in May.
Matt says the doctors expect this procedure–which will use a 20-mm balloon instead of the 4-mm size when she was a baby–to last more than two decades.
Alexandra was also born with Hirschsprung’s disease, a condition that causes missing nerve cells in part of her colon. On July 18, when she was only 11 days old, Alexandra underwent surgery and now uses a colostomy bag. Her bowel function is scheduled to be returned to her body in March during a procedure by pediatric surgeon Emily Durkin, MD.
Despite all the medical problems, Matt considers his family blessed.
“This is not something that one ever would anticipate or plan for,” Matt says. “I think it’s an incredible blessing to be exposed to the various medical things and have them come out so positively.”
Matt remembers how stressful it was watching Heidi carry a baby that only had a 35 percent chance of living. When Mighty Girl didn’t kick, the couple would panic.
But now, she’s kicking and cooing and doing a mighty job of lighting up her parents’ lives.
“I am so proud of her,” Matt says. “She can hold her head up by herself. She’s starting to smirk, starting to let you know when she wants something. You can follow her eyes when she’s looking at something that’s interesting to her. She’s starting to get a little personality.”
She’s still surfing the lower side of the growth chart, but to her parents, she’s larger than life.
“She looks like she could have been born just a couple of weeks ago,” Matt says. “But when she holds on to your finger, she just holds on so tight. She’s got a grip you wouldn’t believe.”
Just like the grip she had on life, when all odds were against a little girl with a mighty heart.