With a houseful of kids — ages 5 to 16 — Teresa Hines in 2008 learned she was pregnant with her fifth child. In her late 30s, she agreed to the recommended genetic testing.
“Our test came back positive at 18 weeks for Down syndrome,” said Hines, now 48, of Mount Vernon.
She got the news while at work at Cornell College. She immediately called her husband.
“I was upset to the extent of, is this my fault?” Hines said. “But within a couple hours, I was totally over it. I had no reservations whatsoever.”
Throughout her pregnancy, Hines said, she had frequent ultrasounds and none confirmed the Down syndrome diagnosis. So she didn’t tell her other kids. She waited until their daughter — Kendra Kay Hines — came into the world on March 29, 2009.
She was seven weeks early, weighing only 4 pounds, 1 ounce. Based on the baby’s appearance, the medical staff suggested Hines follow up with confirmation testing — which verified Down syndrome.
But Kendra had none of the medical problems that can accompany the genetic condition, including heart and stomach issues, and she went home after just 13 days in the intensive care unit.
Because tiny Kendra was so fragile, Hines and her husband slept beside her in a “Moses bed,” like a basket they nestled between them.
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One night, when Kendra was just 2 months old, Hines got up for a drink of water. When she returned, Hines noticed Kendra sounded funny. So she flicked on the lights.
“And she had stopped breathing. She was turning blue,” Hines said. “I immediately picked her up and kind of just pushed on her chest a little bit. She started breathing. My husband called 911.”
Kendra was rushed by ambulance to a hospital in Cedar Rapids, and then transferred to the University of Iowa Stead Family Children’s Hospital in Iowa City. At birth, a pediatrician had told the couple — who noticed Kendra’s breathing sounded funny — their daughter had a condition called “stridor,” or noisy breathing, and it was normal.
“When we got to the university, we were told it should not happen,” Hines said of the breathing lapse.
Kendra was diagnosed with a condition that involves excess skin around the airway, and promptly underwent surgery to remove it — although that wasn’t the end of it. She has continued to battle breathing problems, enduring five sleep studies to fine-tune her treatment plan.
Those studies have revealed Kendra stops breathing, on average, nine times a night.
So she sleeps with a CPAP machine — which applies “positive airway pressure” to help her apnea. Had Kendra not received the diagnosis and surgery early in her life, Hines said, she might not be here now.
“They are truly a miracle to our family,” Hines said of her daughter’s UIHC providers. “We would probably not have Kendra today if they hadn’t figured out the problem.”
And Kendra, she said, is pure joy.
“She is amazing,” Hines said. “She reads. She writes. She is just amazing.”
Kendra is mainstreamed at school and, as she heads to junior high this year, has a core group of five best friends. She does volleyball and cheerleading. She’s a “huge” fan of singer Maddie Poppe and the family planned to see her at the Iowa State Fair.
Another thing Kendra loves is the Iowa Hawkeyes — which means her enthusiasm over being chosen as one of 13 “kid captains” for this upcoming football season is off the charts.
“She wakes up about it, she goes to bed about it,” Hines said. “I can’t even explain her. Every second it’s, ‘I’m kid captain. I’m kid captain.’ Yes Kendra, we know.”
The UI Stead Family Children’s Hospital is gearing up for its 11th season honoring “kid captains” after starting the program in 2009 as a partnership with the football program to celebrate the pediatric patients’ “incredible stories.”
This year’s captains were chosen from 241 nominations from five states.
The 2019 captains are:
• Aubrey Bussan-Kluesner, 8, of Dyersville
• Cien Currie, 6, of Winterset
•Skylar Hardee, 8, of Hubbard
•Kendra Hines, 10, of Mount Vernon
• Aidan Kasper, 14, of Cedar Rapids
• Charlotte Keller, 7, of Bellevue, Neb.
• Cooper Leeman, 5, of Radcliffe
• Andrew Morlan, 15, of Cedar Falls
• Lucy Roth, 10, of Iowa City
•Enzo Thongsoum, 9, of Des Moines
• Jackson Tijerina, 8, of Council Bluffs
• Jeg Weets, 6, of Morrison, Ill.
• And Gabby Yoder, 8, of Kalona
Visit uichildrens.org/kidcaptain for more information on each Kid Captain.
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