Flawed health care system makes playing by rules daunting task

When little Matthew King recently ate a Cheeto, his mom and dad were stunned.

Health-conscious parents might cringe at the thought of their 2-year-old's choice of snack, but for Terri and Michael King, it was a blessed moment.

"The Cheeto was a godsend for us," Terri says.

She's not kidding. Her Matthew isn't like other children. Born two months premature with a rare heart defect and lacking a pulmonary artery, he spent the first six months of his life in the hospital and underwent two major surgeries by the time he was 10 months old.

Doctors at Sunrise Hospital and Stanford University Medical Center spent months balancing the tiny baby's vital signs. His heart ailment, which was temporarily repaired by creating a pulmonary pathway out of cadaver tissue, damaged his underdeveloped lungs and kidneys.

Although his health is stable these days, Matthew remains on medication and suffers from oral aversion, which, simply put, means he doesn't eat voluntarily. He receives his nutrition each night through a stomach tube.

Thus, the Cheeto epiphany.

By the time they're 2, most tots will sample anything they can get their hands on. Not Matthew.

Nothing has come easily. Terri remains at his side constantly. Michael, a Metro detective with 12 years experience, works to keep the family afloat and insured.

Just 2 years into his life, Matthew had nearly exhausted his family's medical policy with essential but expensive stays at Stanford. Although the Kings recently received good news in the form of a higher catastrophic cap to their medical plan, they live each day with the knowledge that their doctors believe Matthew will need pulmonary replacement surgery an average of once every three years for the rest of his life.

"We were told that. had he been born even 10 years ago, he may not have made it," Terri says.

Like most mothers in similar predicaments, she prays each day for her child and her family and scours the voluminous medical bills for mistakes. Every dollar counts when you're trying to do the right thing and pay your own way in the surreal world of medicine.

"When he was first born, we really had no idea what was going on. We were a little ignorant. We thought, 'They'll fix it and he'll be fine.' At Stanford we realized how hard this was going to be."

They receive some financial relief because they administer so much of Matthew's medical treatment at home instead of in the hospital. And their experience has not only taught them a lot about themselves and their faith, but also about the health care system.

A catastrophic medical issue is an odyssey that's difficult to comprehend. The insured receive essentially the same health care as the uninsured, but they live with the crushing pressure of attempting to solve the riddle of the system while keeping up with the bills.

Not that the Kings have any intention of changing who they are, but they realize that some aspects of the health care system work against those who follow all the rules.

"When Mike and I were in the hospital, it was hard enough to handle a sick child," Terri says. "The financial end is just impossible. At the prices of health care nowadays, you can't afford it. You're pretty much paying for all those around you who aren't paying."

There's the rub. The system is so flawed, it can be argued that it pays to manipulate it. It's fortunate so many people follow the rules, or it might collapse altogether.

For the Kings, relief came in the form of a raised cap on their coverage. They know other parents of very sick children whose insurance has been exhausted.

"The thing for us is, right now we're very, very fortunate," the mother says. "We were told we were out of insurance, and for three months we were panicking. I treat our insurance like a savings account. I am penny-pinching. I watch everything. I just worry about running out again. If he's going to have surgeries for the rest of his life, I worry about running out. We do have some hope. But I live every day not knowing for sure.

"Everything has worked out for us, for now."

They believe in the system, but pray for relief.

John L. Smith's column appears Sunday, Tuesday, Wednesday and Friday. E-mail him at Smith@reviewjournal.com or call (702) 383-0295.