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Lexie and Steven Kinson were expecting their first baby.
The young couple had deliberated about when to start a family and had even relocated from Southern Maryland back to Colorado, where Lexie is from, so they could be close to relatives.
But as they excitedly waited for their new addition, they started getting disturbing news from their doctors. “We were told at our 18-week appointment that most likely he had spina bifida as well as bilateral clubbed feet, and we had the choice to terminate the pregnancy,” Lexie wrote in an essay about her son.
Termination was not an option for their family, she said. But they knew nothing about spina bifida, a birth defect in which the bones of the spine do not form properly around the spinal cord, and they were “beyond scared,” she said. Other health issues were also being suggested.
So multiple challenges awaited little Ari Kinson and his parents when he was born at 28 weeks gestation on Dec. 26, 2012, at the University of Colorado Hospital. He weighed 1 pound, 2 ounces and was only 10 1/2 inches long.
Premature babies — those born before 37 weeks gestation — are at risk for more health problems and may need to stay in the hospital longer than babies born later, according to Jennifer Abell, division director for the Suburban Maryland Division of the Maryland Nation Capitol Area Chapter of the March of Dimes. They also may have long-term health problems that can affect their whole lives. Nearly half a million babies are born prematurely each year in the United States.
“But thanks to advances in medical care, even babies born very prematurely are more likely to survive today than ever before,” Abell wrote in an email.
Ari spent the first five months of his life in the neonatal intensive care unit. During that time, he developed pneumonia six times and had three major surgeries — laser surgery in both eyes, spinal surgery and double hernia surgery. “He kept fighting through it all,” Lexie wrote of Ari’s first few months of life.
“He was a true fighting machine. The strength within him blew my husband and I away. We were so amazed to see him grow. When we hit 2 pounds, I thought it was the absolute greatest day on this earth,” Lexie wrote.
She was so impressed with Ari’s toughness and persistence in spite of his health challenges, that she entered his story and a photo of her son in the fourth annual Preemie Power Photo and Essay Contest, sponsored by Hand to Hold, a peer-to-peer support network for parents of preemies and parents in need of support.
And Ari’s story won.
Kellie Kelley, founder and executive director of Hand to Hold, which is headquartered in Austin, Texas, said that a panel of neonatologists and NICU nurses selected Ari’s story as the winner of the 7 to 12 months age category, as well as the overall winner of the contest. “Ari-tron,” as his mother refers to him, was also recognized with the Thundering Thurston Award for earning the most votes in the contest.
There were 185 entries in this year’s contest, Kelley said Monday. Those entries came from 40 different states as well as Canada, the United Kingdom and Ireland.
“I really wanted to recognize not only the baby, but the family for the incredible challenges they’ve overcome,” Kelley said of why she created the contest. “They provide so much hope and inspiration.”
In Lexie’s entry for Ari, she described his “superhero characteristics” — stamina, healing ability and his ability to spread joy.
“Ari-tron lights up a room with his smile. It’s one in a million,” Lexie said.
“When you look at that smile on his face ... [his challenges haven’t] slowed him down,” Kelley said. “For me, it’s everything that preemie power is about. Even with all the complications, you still see him thriving. His story is one of hope for others.”
The Kinsons moved back to Southern Maryland in June so that Steven could take a job at Webster Field in St. Inigoes and Lexie could stay home to care for Ari. They live in Great Mills.
Taking care of their medically fragile son has been a challenge for the young parents. “It’s been a learning process for both of us,” Lexie said. But she noted that they have received a great deal of support from family and friends.
Ari just celebrated his first birthday and “he’s trying to learn to crawl,” Lexie said. “He scoots around on his little butt. ... We’re trying to wean him off his oxygen” so the oxygen tubes don’t get in the way as he tries to become more mobile. He now weighs 11 pounds, 13 ounces.
While there are a lot of unknowns about Ari’s future challenges, “his doctors think he has a really good chance of having a normal ... life,” his mom said.
“He’s just so strong, and he’s just endured so much ... [and] has just bounced back. He’s just a phenomenal little kid,” Lexie said. “I just feel like we’re very blessed.”
To learn more
To see all the winners in the fourth annual Preemie Power Photo and Essay Contest and to learn more about Hand to Hold, visit www.handtohold.org.
For more about the work of the March of Dimes, see www.marchofdimes.com.