Surprises and Blessings
Roger and Sarah Britton didn't know in advance whether they were going to have a boy or a girl as Sarah's due date neared - that's the way they wanted it. So they decorated her room in neutral colors, festooned with a theme of baby ducks.
But the big day came earlier than they expected, about a month sooner than they had bargained for. And when their daughter Tinley entered the world, the medical staff had to rush the baby to an incubator Roger and Sarah barely got a good look at her.
That night, a parade of doctors came to see the Brittons and asked many questions as they gave the new parents some unsettling news - their baby had a rare genetic condition called Apert syndrome that causes the joints of the skull, hands and feet to fuse together. The condition gave Tinley's skull a clover leaf appearance and gave her young brain no room to grow.
More than a year later, Tinley is making great progress, and she and her parents are regular visitors to the University of Illinois Hospital & Health Sciences System for doctor's appointments and surgeries. But Sarah remembers, through tears even now, the first time she laid eyes on her daughter 24 hours after birth.
"We walked down the hall to her incubator and I started crying," she says. "Roger thought maybe I was crying because of the shape of her head. But the nurses had wrapped her in a blanket covered with baby ducks, just like her nursery. I thought to myself, 'Where did they get those blankets?' And that's when I knew it was God's way of saying, 'I'm taking care of her.'"
The care that children like Tinley get at the Children's Hospital University of Illinois is remarkable even to some of the doctors. Pravin K. Patel, director of craniofacial services at the University of Illinois Craniofacial Center and Tinley's primary surgeon, says the center is one of the few of its kind in the world.
"It's an entity unto itself because of the physicians with multiple disciplines who can see the child," he says. "These kids have conditions that have such complex effects. The skull affects vision, breathing, speech, hearing - and, of course, the ability to eat and chew."
Patel is impressed with Tinley.
"A lot of children just have one joint of the skull fused together, not all of them. I actually do think it's remarkable how well she's doing. She's a tough little girl."
Sarah Britton says the University of Illinois Hospital & Health Sciences System medical staff have taken good care of her daughter. "I really don't see how anyone could have done a better job for Tinley."
The Neonatal Intensive Care Unit provides state-of-the-art care by an outstanding team of neonatologists. The Maternal-Fetal Medicine and Neonatology programs together comprise a Regional Perinatal Center.
