He should have been floating peacefully in his amniotic sac. But a stray fiber from the lining of the sac wrapped itself around his hands, fusing all the fingers on both hands into tiny fists.
That’s how young Norman Kennedy was born. But it isn’t how he’ll live his life.
Thanks to the skill of Ann Van Heest, a U of M and M Health Fairview pediatric hand surgeon, and her staff, the Burnsville, Minnesota boy’s fingers are now separate.
An ominous start
Norman was born almost four years ago, on the first day of the shutdown. He was also born with a hole in his skull and an incompletely formed eyelid, but the fused fingers presented the biggest challenge. Nevertheless, he learned to both crawl and walk with his hands and arms in casts.
And he did just fine.
“Norman is such a wonderful kid,” Van Heest says. “It’s a joy to be on this journey with him and his family.”
His fingers, she says, represented a case of amniotic band syndrome (ABS), which affects about one in every 10,000 babies. Most of us can consider ABS a rare occurrence. But the U of M doctors see things from a different perspective.
“If it’s your child, it’s not rare,” says Jakub Tolar, dean of the U of M Medical School. “It’s 100 percent of who you are and what you think about.”
Joy of an everyday life
Besides her superb medical care, Van Heest recently gave Norman a children’s book she co-wrote. Titled “Proud To Be Me,” it sweeps away some of the mystery surrounding physical differences and encourages kids to love and accept themselves for who they are.
For their part, Norman’s parents—Christine Kennedy and Alex Sernick—gave their son the priceless gift of Emilia, his little sister. And Sernick came up with a unique gift. His right forearm now bears a large tattoo depicting an X-ray of Norman’s tiny hands after surgery.
“I want Norman to know, when he does get older, that I’m so proud of his hands and his fingers that I got them tattooed on my arm … [T]his is a symbol of how much I love him, no matter what happens in the future,” Sernick says.
“The function of Norman’s hands is very good,” Van Heest reports. “He’ll be able to hold a pen, button buttons, zip zippers.
“And we’ll be able to help him learn to do other things, too, so he can lead an everyday life.”
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