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.

Lucky to Get Health Coverage

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.

Saving Eme's Life

Emerson's life in the confines of a hospital crib began on Feb. 7, 2008, when she was admitted to Denver Children's Hospital with fungal sepsis -- a blood infection -- that kept coming back, over and over.

White said she remembers a late-night conversation when a doctor in Denver told her that Emerson probably only had six more months to live and would likely survive just one more emergency visit. The next morning, the family and her doctors began considering a multiple-organ transplant.

Dr. Alan Langnas is the chief of transplantation at the Nebraska Medical Center, where Emerson was taken for her transplant. It's one of the busiest multiple-organ transplant hospitals in the world.

Langas said Emerson's condition caused her bowels, though intact, not to work.

He first saw her as a 19-month-old in April and was there when the donor organs came in. The organs came from a "size-compatible" person, though that's all he'll say about the donor.

About two-thirds of the patients who receive transplants like Emerson's are alive in five years, he said, and the "charming" little girl was on her way to being in that majority. She was released from the hospital in September into a room at the transplant center where families can live during the process.

But another blood infection in October sent her back to the hospital. Her heart stopped beating the next day. Resuscitated, but still very sick, Emerson was later diagnosed with pneumatosis intestinalas -- air in the wall of her bowel.

Emergency exploratory surgery showed that most of her donor small bowel was necrotic and had to be removed.

"She's still in the recovery phase," Langnas said.

Now, he said, doctors are looking to answer two questions: Does she have enough small bowel left to sustain her? And is this "little girl strong enough to get through another transplant?"

"These are very difficult decisions we have to make," he said. "We just want to do what's best for Emerson."

Langnas said he expects to have answers to those questions in the next month.

"Her mother and this little girl are so resilient," Langnas said, calling Erika White a "wonderful advocate" for her daughter.

Both Langnas and White said their goal isn't to simply extend Emerson's life, but to give her a quality life that she can enjoy outside a hospital, something she's never had.

Quality of Life vs. Quantity

But while the Whites concerned themselves with their only daughter's medical needs, they were facing the prospect of not being able to afford the second transplant. The first, White said, cost close to $1 million.

When their private insurance provided by Jim White's dealership ran out, Medicaid took over via a state program that waived the family's income level, which was too high to qualify for Medicaid under normal circumstances, but not high enough to afford the care that would keep their daughter alive.

Emerson wouldn't qualify for Nebraska Medicaid, White said, because she has never been a resident of the state except for her stays in the hospital, where many of the patients are from out of state.

In an online blog, dated Jan. 20, White detailed the family's financial struggle to maintain two residences on one salary and find a way to get continuing coverage for Emerson. If she needs a second transplant, Langnas said, the hospital would require a portion of the cost up front to get her back on the waiting list.

"No parent should be forced to watch their child die knowing medical science can save their life ... only they can't afford to pay for it," White wrote.

Fortunately for the family, it looks like they won't have to.

Joanne Lindsay, public information officer for the Colorado Department of Health Care Policy and Financing, told ABCNews.com that the employees there have been "tireless" in their search to find a program that could take Emerson.

"We're so excited," she said of the news that the little girl would be accepted in the state Medicaid's family program.

Emerson's case, Lindsay said, was "very unusual" because the family's private insurance, not the state, was the one that authorized her out-of-state care in the first place.

For White, she just wants to see her daughter to live a life as close to normal as possible. Emerson was so enthralled by a bichon frise she saw at a hospital pet therapy program on one of her good days that she got her own for Christmas. Bella, White said, is waiting for Emerson at the Nebraska apartment, and pictures are fixed on her crib.

White said she hopes sharing their struggle will help other families dealing with seriously ill children and the medical bureaucracy.

"I want the same for her as I want for my other children," White said. "I want her to have the opportunity for a happy life."