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Army family caught in health care fix

Only one company provides insurance for active-duty families, and it won't okay what their child needs because of cerebral palsy.

By CAMILLE C. SPENCER
Published February 12, 2007

WESLEY CHAPEL - For nine years, Edie Seeton and her husband tried to conceive.

Edie had dreamed of children since she was a little girl. She wanted to read to them, teach them to climb trees.

But doctors said she was infertile. So the couple who longed to be parents tried fertilization shots. That failed. Sperm injections didn't work, either.

Their last hope was in vitro fertilization. Edie and Dennis took out a second mortgage to pay for the $12,000 procedure.

"We just really wished it would happen for us," Edie said. "I didn't care what we had, as long as they were healthy."

* * *

On Nov. 14, 2003, a pair of pint-sized twin boys came into the world, two minutes apart.

William and Devlin were only 26 weeks old. Each weighed a little over a pound.

Premature babies have weak immune systems, and the boys contracted a neonatal infection. Antibiotics couldn't ward off the infection in William's body. It spread to his kidneys.

William died three days after he was born.

Devlin's infection caused blood to seep into his brain.

For months, tubes and wires kept his body running. Edie remained at her son's bedside. Meanwhile, Edie's husband, Maj. Dennis Seeton of the Army, was stationed in Afghanistan.

Edie wanted to sue Tampa General Hospital, where the boys were born. But there was no proof of the infection's cause, and the lawyer she consulted refused to take the case.

"I was upset and angry," she said. "I was in a state of shock, going through the motions. I cried a lot."

Denial from insurance

A few months after he returned home, Edie noticed Devlin wasn't eating properly. His body was sending food to his lungs. Edie took Devlin to St. Joseph's Hospital. Doctors ran tests for six months before a CAT scan revealed an abnormality on Devlin's brain.

A doctor told her something she never thought she'd hear.

The blood that had seeped into Devlin's brain caused him to have cerebral palsy, an incurable condition that causes posture and movement disorders. Devlin became one of 5,000 infants and toddlers in the United States diagnosed with the disability every year.

Cerebral palsy has taken Devlin's eyesight. He ingests food through a tube connected to his stomach. He takes 12 medications a day. He can't walk.

And sleep apnea, which causes people to stop breathing while sleeping, keeps Devlin from getting a good night's rest.

Cerebral palsy is considered a developmental disability that can hinder a child's ability to learn.

The chances of Devlin living a normal life are slim.

So Edie, 50, provides round-the-clock care for her son.

For help, a sleep-deprived Edie turned to Tricare, the family's health insurance company.

Edie requested a nutritionist, an electrical stimulator to help Devlin swallow and a device called a Creepster Crawler, which helps children with limited mobility learn to crawl.

Tricare denied the requests. That's because the plan doesn't cover them, said Julie Ice, spokeswoman for Humana Military Healthcare Services, the contractor which operates Tricare.

Ice said Tricare is the only health care company provided by the government for active-duty members of the military. She said the Seetons, whose $50,000 income exceeds Medicaid requirements, could talk to their Tricare case manager about finding another insurance company that will fulfill their needs.

"It's something the family would have to do on their own," Ice said.

Meanwhile, Dennis, 50, now stationed eight hours away in Qatar, worries about his family. He is considering becoming a convoy security guard in Iraq.

It poses more danger than his desk job with the U.S. Central Command headquarters but pays twice what he makes now.

For Dennis, more money means more hope for his son's future.

In an e-mail last week, Dennis wrote, "I figure I still have the odds in my favor and could do that job for 1-2 yrs and get out alive with maybe $100-150,000 that I could put into a fund for my son, so that when he is 21+, hopefully there will be enough money for him to live off of or for someone to take care of him."

An uncertain future

Devlin's bedroom more closely resembles that of an aging cancer patient than a little boy.

A hospital bed crowds the small room. An oxygen tank sits on the floor.

Instructions are posted on a wall. Among them: the thermostat must be at 80 degrees at all times or fluid will go into Devlin's lungs.

Devlin's future is unknown. He may never climb a tree, ride a bike or live on his own.

Even so, Edie and Dennis are grateful that Devlin survived. They cling to hope - for a miracle, for a cure.

They know cerebral palsy has taken Devlin's brain, but Edie says his playful spirit remains intact.

On a recent afternoon, Devlin lay on his tummy in the living room.

A teacher stopped by to help Devlin respond to lights and colors, encouraging him to use whatever brain function he still has. One toy's lights and sounds excited the 3-year-old.

He turned his head and smiled, prompting applause.

Camille C. Spencer can be reached at 727 869-6229 or cspencer@sptimes.com.

[Last modified February 12, 2007, 01:56:38]