Medically fragile kids find a home at Children's Habilitation Center
Center in Harvey offers hope, care for children in need
Tuesday, March 19, 2013
We've read the headlines and savored the feel-good from these miraculous happy endings. A visit to the Children's Habilitation Center in Harvey will tell you the rest of the story.
"Many of these children are the ones who aren't going home," says Georgann Karontonis, a consultant at the medical center that is home to more than 60 children who need subacute and transitional care.
That, in layman's terms, means kids who need 24-hour ventilators, tracheotomies, feeding tubes and IV therapy. They are preemie babies, infants who didn't thrive, kids with chronic lung problems. Many are kids who, through some sort of mishap, lost oxygen flow to the brain long enough to cause problems that can't be fixed.
Welcome to a mysterious place that exists under the radar of the common family life the rest of us live. Many of their stories deliver a powerful safety memo, as CHC staff pediatrician Dr. Pamela Nickson dispenses a passionate warning about innocuous-seeming things in daily life that are hard for parents to see as dangerous-a hot dog, a grape or popcorn.
"This is the other side of what happens when you have a normal healthy baby for nine months and one minute of tragedy," she says.
Among kids who go to emergency rooms for choking, almost 60 percent were food-related, according to U.S. Consumer Product Safety Commission data. Hot dogs, cheese sticks and chunks, hard candies, gum, nuts, grapes, carrots, popcorn, marshmallows and peanut butter are the most dangerous threats. Kids get all sorts of small round things-coins, balls and balloons-caught in their throats.
Nickson's also the doctor for the toddlers who were shaken, left alone in a bathtub, fell down the stairs, or unlocked the gun cabinet.
Accidents are among a wide range of mishaps that can create medically fragile children. Some of the children who live at CHC were the victims of abuse so severe-starvation, battering, neglect-that their bodies never will recover.
Many are babies born with serious conditions, like Myka'-le, who had a stroke inside his mother's womb. After an exhaustive battery of testing, his mother's doctor concluded she was "just that one in a million moms who is going to have a baby with a whole bunch of problems."
There are infants born perfect to parents who did nothing wrong, but now look ahead to who knows how many years of unanswered questions and irrational guilt.
Some of the children eventually will go home. But a lot of them never will.
When Nickson looks in the rooms at CHC she sees beyond the tubes, the monitors and tracheotomies. She see the cribs that look like cars, the stuffed toys, the Snoopy blankets.
"I see happy, healthy playful children in an altered state," she says. "Our job is to make life as normal for them as if they are normal for life."
Hope remains for Tariel
Tariel was an adorable baby girl, the kind you'd see in a Pampers commercial. And mom, Tamela Martin, couldn't have been happier.
With a 2-year-old son Nathaniel and 6-month-old Tariel, Tamela felt the Martin family was perfect. Complete.
Tariel looked especially darling all dressed up for church one morning in October. Tamela bathed and dressed her. Then, with a kiss, she laid Tariel in her crib for a nap and set off to fix breakfast for the rest of the family.
"When I went back and picked her up, she wasn't breathing," Martin says.
Her husband, Omar, started CPR while she dialed 911.
"We thought she had died," her mother says. "It was unbelievable. We went away with everything fine and came back a few minutes later and she was gone."
Doctors revived and saved Tariel after the near-SIDS incident. But her heartbeat and breathing stopped long enough to leave Tariel with long-term disabilities. She needs a ventilator to breathe and a feeding tube to eat. She doesn't talk or communicate.
"The first time my husband saw her, he cried," says Martin, a manager for the federal government. "It's one of the few times I can really remember him actually crying."
Her parents, of Blue Island, believe Tariel, now nearly 10, recognizes their voices when they visit her at Children's Habilitation Center. Lately, Omar, a quality assurance worker in the chemical industry, has been the one to keep the vigil of visiting Tariel. Over the years, church friends have continued to call, blow out birthday candles and to pray.
"It's very heartbreaking to face," Martin says. "For a long time I blamed myself, if I had something to do with this. Finally, I've resolved it with the help of prayers, and the support of my family and my pastor."
Tariel goes to school at CHC, where teachers help her touch and experience different objects, colors and sizes. They do art projects and watch movies. Her grandfather still maintains a Bright Star college fund with Tariel's name on it.
"I keep praying some day she will come out of the state she's in," Martin says. "I would love to see her healed. I keep believing God can do anything."
Grandmother helps Janiyah go home
Little Janiyah couldn't use words to talk to her grandma.
But Shirley Weathersby heard her loud and clear. "Where have you been?" those big brown eyes asked. "Why haven't you come to see me?"
Janiyah came to Children's Habilitation Center when she was 9 months old after doctors removed a growth that may have been a separate fetus growing in her neck. Fetus in fetu, it's called-a very rare abnormality that happens in only 1 in 500,000 live births.
Weathersby went to see Janiyah several times a week at first. But, as the months folded into years, more and more time passed between visits.
As those years melted away, Janiyah thrived and overcame many of her physical limitations. Janiyah was one of the lucky ones, doctors told the family. She would be able to come home and live a relatively normal life.
But it wasn't that simple. Janiyah's parents were "not able to provide a stable home," Weathersby says.
Her mission became clear the day her son Jimmy pleaded Janiyah's case. "I had to get her home," says Weathersby, who in her 50s, thought she was all done with raising children.
Little did Weathersby know, as she started learning the things she'd need to know to care for Janiyah in her home, that she was granting her son a last request. Jimmy Robinson died in a shooting not long after.
"I see my son when I look at Janiyah," she says. "She looks like him and her whole attitude is like him. It's like raising him all over again with her."
Janiyah's attitude is a sunny one.
She attends second grade at McNair Elementary School, enjoys after-school programs and is looking for a place to take dancing lessons. Janiyah, 7, talks about wanting to be a doctor when she grows up.
"I love you, I love you," she says cheerfully, over and over, as her grandma talks on the phone.
Parents' love endures
Even though doctors tell them he is in a "vegetative state," Myka'-le's mom and dad can tell when he's happy.
"In our opinion, he knows us and our friends," says his mother, Katelynn Cossman.
"We had to learn his way of communicating," she says. "When he is happy, the ventilator readings that measure his breaths per minute go up."
Now nearly 2, Myka'-le (pronounced Michael) was born after he had a stroke in the womb at just 35 weeks.
When the oxygen stopped flowing, it injured both sides of his tiny brain. He can't keep his airway open to breathe or swallow food. His feet and arms are deformed.
None of which ever-so-slightly dims the love his parents, Katelynn Cossman and Jorge Dickenson of Hoopeston, feel for their "beloved little boy."
Just 19 and 21, they spent the first year of Myka'-le's life at St. Francis Medical Center in Peoria grooming to go home.
After multiple surgeries, Myka'-le graduated from the neonatal intensive care unit and finally became an "Almost Home Kid."
Once they got home, though, it was difficult to find reliable in-home nurses. It fell to the young parents to provide round-the-clock nursing care for their baby. It was taxing, but they maintained their "whatever it takes" attitude.
But it was a financial, not physical, hardship that doused their dream of keeping Myka'-le at home.
Children's Habilitation Center looked like an ideal place for him. The difficulty in finding a ride limits their visits to once or twice a month.
"Day by day, we don't know when he's going to pass. It could be tomorrow," Katelynn says. "We're just happy for the time he's still here and hope we can bring him home in time."