Saving Emerson: A Family's Struggle With Health Care

Jan. 23, 2009— -- Emerson White is a girl's girl. She chooses her own dresses, gets her hair done, her nails painted.

And she does it from a hospital bed where she's spent the better part of her two years.

"Eme," as her family calls her, is unaware of the struggle her family has gone through to get insurance coverage for one multiple-organ transplant and a possible second to come.

"She's very happy," mom Erika White told ABCNews.com. "She's the happiest baby."

Emerson was diagnosed at six months with intestinal pseudo-obstruction exacerbated by an undescribed metabolic disease. She received a liver, pancreas and small bowel transplant in June, but most of her donor small bowel turned necrotic and had to be removed in emergency surgery Dec. 31.

Doctors say she may need another transplant, but either way her medical bills continue to mount, totaling about $2.5 million so far, according to White.

After several days of worry and frustration, White was notified Thursday afternoon that Emerson would continue to be covered under Colorado's Medicaid program, a benefit that was almost lost because the little girl, who has already maxed out her private insurance's $2 million lifetime cap, has spent so many months being cared for at an out-of-state hospital.

"Obviously, it's a huge weight lifted off our shoulders," White said. "We are so grateful they found a way to continue coverage."

White's husband and two sons are still living in Monument, Colo., where Jim White works as a manager at a Ford dealership in nearby Colorado Springs. While Emerson remains at the Nebraska Medical Center in Omaha, Erika White lives in a rented apartment in town.

Emerson doesn't remember her home in Colorado, but enjoys blowing kisses to her nurses and watching Elmo and the Wiggles on TV.

"She's the strongest little girl I've ever known," White said.

Gail Wilensky, a senior fellow that the Maryland-based health education foundation Project Hope, said it was unusual that medical coverage was found so quickly.

"It may be because of the sensational nature of the condition and the child," she said.

Wilensky said both private and government insurance programs are often forced to make decisions about how much money should be spent on a certain patient when there are many more to come.

It's not economics, she said, it's ethics. And as many as 20,000 people die unnecessarily each year, she said, because they don't have insurance.

But in this case, at least, the system worked.

"It's working in a sense that nobody is putting up a barrier," Wilensky said.

The Whites knew Emerson likely would be born with some kind of health complication after a perinatologist warned them that Erika White's high level of amniotic fluid could cause problems for their unborn child.

"There was nothing to indicate exactly what problems," White said. "We could never imagine we'd be walking this path right now."

While their middle child, Collin, 6, was born healthy, Bradley, their 9-year-old, suffers from the same metabolic disease and lives a normal life with medication.