MEDICAL NEWS

That stubbornness just might be the reason the 7-year-old is alive today—that and the attention she’s received from her family and the staff at Home of the Innocents where she’s received care from nearly the beginning of her life.

Her daughter, Brianna Mills, was born Dec. 2, 1999, with Hirschsprung’s disease, a disorder of the intestines in which nerves are missing from parts of the bowel, causing obstructions that can cause infections or death.

After seven years, doctors are now ready to send her home full-time to be with her mother and grandmother in the western Kentucky town of Marion, in Crittenden County, where she’ll require help from a nurse.

Before Brianna was born, Orendoff was living in Bardwell in Carlisle County in far western Kentucky. After seven months of pregnancy, Orendoff had returned from a hospital visit where she had spent two days with contractions. Resting at home, Orendoff’s water broke. She was flown to the University of Louisville hospital, where doctors induced labor.

“She didn’t want to come out right,” Orendoff, 32, said Thursday. “She was stubborn. She probably gets that from me.”

Brianna’s left arm was over her forehead and doctors had to remove her by Caesarean section. She was 1 pound, 11 ounces.

She was Orendoff’s first child. “I’d never had a premature baby before,” Orendoff said. “I was scared for her.”

She saw her baby’s face one time after she was born. She didn’t see her face unobstructed with medical tape and tubing until five months later.

Both mother and daughter have led medically challenging lives. Orendoff was diagnosed with a single-cell sarcoma, a floating cancerous tumor in her chest. She went under a surgeon’s knife to remove the tumor in March 2004. She couldn’t be at the hospital for her daughter when doctors removed Brianna’s colon and half of her large intestine earlier the same year.

Brianna had her first surgery—a colostomy—when she was less 2 weeks old and weighed less than 2 pounds. She’s had to learn how to walk with a ventilator because of an affiliated hyperventilation syndrome. She still needs a ventilator when she sleeps.

She’s takes 17 medicines, Orendoff said, and undergoes breathing treatments twice a day.

It’s no surprise that Brianna has become part of the family at Home of the Innocents’ Kosair Charities Pediatric Convalescent Center, which cares for nearly 50 medically fragile or terminally ill children. Home of the Innocents is a private, nonprofit agency that also provides residential and community-based services to children who have been abused, abandoned or neglected and supports children with autism who need in-home and in-school care.

Brianna’s journey represents the “maximum fulfillment of our mission,” said Gordon Brown, Home of the Innocents’ president and CEO.

“We were fearful we were going to lose her so many times,” he said. “It’s literally a miracle for us.”

Brown’s office has a window facing a backyard playground for the children, and he’s seen nurses take Brianna for walks recently around the track.

“Every time I see her walking, I get a thrill,” said Brown, who has been with Home of the Innocents for 15 years.

In its 126th year, the home operates with an $18 million budget, with 30 percent of that coming from donations. The home employs 350 people who care for 120 children at Children’s Village in downtown Louisville and three separate facilities and provide services for 150 children through in-home programs.

A young videographer, Brent Pressey, even created a presentation that shows Brianna with nursing staff, a teacher and a volunteer who have cared for her.

“Since Brianna learned to walk, that’s been one of her favorite activities,” said Milton Schmidt, a respiratory therapy manager at the center, calling it a “Herculean, heroic achievement.”

“Her drive and determination really led the rest of us,” Schmidt said.

She would toddle along with a portable ventilator powered by battery. “They had it on a pole with wheels,” Orendoff said. “She was in a walker, and they just pushed the ventilator with her. It didn’t stop her from doing anything.”

In fact, Brianna’s stubbornness can sometimes be harmful to her. “She loves being here (at home),” Orendoff said. “One time she got mad when she had to go back. She got really angry.”

When that anger rises, she’s prone to pulling out her trachea tube, Orendoff said.

Orendoff’s seen her share of bad luck. Both parents died separately when she was a teenager and living in Indiana. Her second child died when he was 16 months old. And she lives on disability checks now because significant portions of her arm muscles were removed during her cancer surgery.

Brianna’s father isn’t in the picture. He’s in prison and Orendoff has no contact with him. “I’m trying to give her a better life,” Orendoff said.

And she has a network of people who can help her. She has been living with her adopted mother, Catherine Nesbitt, in Marion since she was 26. She is now in a house on her own a few miles away from Nesbitt.

A friend, Rhonda Fratzke, cares for a daughter with cerebral palsy. Brianna listens to her, Orendoff said.

While Orendoff admits she’s nervous about having Brianna home full-time, she says she’s ready.

“I’ve had her for a week at a time before, but I can’t wait until she comes home,” Orendoff said. “They’ve done a great job up there with her, and I’m glad it’s now my turn.”

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On the Net:

www.homeoftheinnocents.org