A pint-size plea for health reform Little girl faces loss of insurance

September 26, 1993|By Sherry Joe | Sherry Joe,Staff Writer

Chelsea Stanton hasn't begun kindergarten yet, but already she has used up nearly $200,000 of a $1 million lifetime health insurance policy -- and charmed President Clinton with her perseverance.

The 4-year-old Dayton girl, whose plight earned her a visit to the ++ White House this month, was born with a number of problems that force her to wear a bag that collects abdominal fluids, use cumbersome leg braces and a walker.

Fearful that Chelsea's health insurance won't be renewed because of her pre-existing medical condition, the Stantons are anxious to see the president's health reform plan become reality.

"I actually cheered at my television," Janice Stanton said of her response to the president's nationally televised address on the plan last week. "I thought his six principles were wonderful. They're exactly what we need."

Two weeks ago, Chelsea, her parents, Warren and Janice, and her brother, Chris, 9, were among 81 people chosen from 700,000 letter-writers to attend a White House Rose Garden event where President Clinton outlined his program.

"I was climbing up the president's lap," recalled a grinning Chelsea, whose photo with the president earned her a spot on the front page of The Sun and other newspapers across the country. "I was pulling on his arm."

In the letter that prompted that White House invitation, Mrs. Stanton described her daughter's health problems and the family's fears that they soon would exhaust what was then a $300,000 lifetime health insurance policy.

Eventually, Mr. Stanton's union, the International Brotherhood of Electrical Workers Local 26, increased his medical insurance to $1 million. But Mrs. Stanton's letter distilled years of frustration about the financial pressures on the family as a result of Chelsea's many medical problems.

Chelsea was born March 24, 1989, at Children's Hospital at the National Medical Center in Washington, D.C., with spina bifida and a condition known as "caudal regression," a complex of birth defects. Within the first 12 hours of her life, she underwent major surgery on her bladder, which was outside her body when she was born. Chelsea also lacked large intestines, and some of her vertebrae were missing. Spina bifida left her with hydrocephalus, or water on the brain, among other physical problems.

By the time she was 8 months old, Chelsea had undergone eight operations and received medical care worth $100,000. Because she doesn't have large intestines, she wears an ostomy bag to collect her body's wastes. She also wears braces on both legs and uses a tiny walker to support herself.

Mr. Stanton's insurance company pays for 80 percent of the medical bills, but that still leaves the family with hefty expenses.

"We pay what we can afford," said Mr. Stanton, an electrical construction manager, who figures he pays about $400 a month in medical bills.

For example, Chelsea wears two types of leg braces, which cost a total of $5,500. She's outfitted with a new pair each year. Physical therapy costs about $250 a month and the ostomy bags cost about $150 a month.

"Every time Chelsea outgrows her shoes, we have to buy new braces," Mrs. Stanton said.

And they expect new expenses as Chelsea grows up. Next year, she will enter kindergarten and will need a wheelchair or motorized scooter to keep up with the other children.

"That's something that's coming up and something we have to financially prepare for in a year," Mrs. Stanton said.

Despite their health insurance, the Stantons regularly skip dental appointments and routine medical exams to help pay Chelsea's medical bills.

The Stantons gave up plans to buy an expensive two-story home in Savage for a ranch house in western Howard County that needed work. Mrs. Stanton eventually was forced to quit her job as an editor to care for Chelsea full time. "It's affected everything," Mr. Stanton said. "Our jobs, the standard of living, everything revolves around the kids."

Chelsea's obstacles don't slow her down. The bright and lively youngster can count to 10 in Korean and can hardly wait to enroll in kindergarten at Bushy Park Elementary School next fall.

But her parents, who expect to pay medical bills for the rest of their lives, say their biggest fear is losing health insurance for her, since many insurance companies refuse to cover a person who is chronically ill.

"There's no way she would be able to get insurance once she's off Warren's policy," Mrs. Stanton said.

The family sees relief in the president's health plan. Under the program, people would not lose coverage simply because they changed jobs, moved or became ill. Pre-existing conditions, such as Chelsea's, would no longer prevent the chronically ill from receiving insurance.

"The bottom line is everyone would have health insurance," Mrs. Stanton said.

In the meantime, the Stantons remain cautiously optimistic.

"The system hasn't eaten us up yet," Mr. Stanton said -- only to have his wife add that "the tiger is at the door."

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