Emma Routh celebrated her fifth birthday Wednesday in a hospital bed full of equipment and princess crowns. How many more birthdays she has may depend in large part on the sacrifices her struggling family makes to obtain her health care.
Emma has Fanconi anemia, which strikes only one in three million people. Emma's parents have already sacrificed a lifetime of possessions to get her treatment at Children's Hospital Boston.
"We've lost our house, we've lost almost everything back home just to make sure we can do this transplant and we get to keep her," said Emma's mother, Brandy Routh, 27.
The Rouths live in a rural area outside the town Palestine, Texas, and the family was on Medicaid when Emma was diagnosed with Fanconi anemia in June 2008.
By December they lost their house and car as the medical bills grew. Emma's two brothers, David, 8, and Dalton, 2, moved in with Routh's father while she spent almost every extra hour ensuring the trip to Boston could happen.
"When Emma got diagnosed I was a full-time student, I gave up my education. I dropped out of college just to make sure there was something I could have done," said Routh.
Routh's first task was to find a bone marrow donor, so she attended 56 bone marrow drives and signed up 25,000 people to a bone marrow registry while searching for someone who matched her daughter. It took more than a year, but in October 2009, the family had found a match.
A Bone Marrow Transplant More Complicated Than Most
Despite the name, the Fanconi anemia is much more complicated than anemia. Specialists say it affects every single cell in a person's body, striking the bone marrow in early childhood and threatening young patients' lives. Anemia was only a symptom.
The condition also complicates the treatment process. The traditional "conditioning" process of chemotherapy and radiation designed to prepare cancer patients for a bone marrow transplant often kills Fanconi anemia patients, according to Dr. Leslie Lehmann, clinical director of the pediatric bone marrow transplant program at Dana Farber Cancer Institute/Children's Hospital Boston.
"You'd need to go to a medical center that specializes in this kind of bone marrow failure, and there's a handful in America," said Lehmann.
Family Uprooted to Boston For Medical Treatment
None of these specialist centers were in Texas, so the Routh family had to convince Texas Medicaid providers to let them seek treatment out of state.
"Because we have Texas insurance, out in Boston our insurance doesn't pay for many things. Everything has to be submitted six to 12 months prior. So if we get an infection and need antibiotics we pay out of pocket," said Routh.
But Routh said the family, without a doubt, supported the decision to go to Boston. Emma's father, Clint Routh, is separated from her mother and is taking shifts with Emma in Boston. But the time spent getting treatment left little room to plan a birthday.
Yet Wednesday, the family received a surprise birthday gift for Emma from the Hope for Henry Foundation.
"I got movies, Play-Doh, and color books, and games, and a princess purse," Emma said.
Laurie Strongin, executive director of the Hope for Henry Foundation, said Emma's condition "tugged on our heart strings" because her son, Henry also suffered from Fanconi anemia. She set up the foundation in memory of Henry, who died in 2002 at the age of 7.
Lehmann said in addition to problems with bone marrow, children with Fanconi anemia are at a lifetime risk for a variety of cancers. The National Heart Lung and Blood Institute estimates the average lifespan for someone with Fanconi anemia is 20 to 30 years.
Emma's parents rushed to Boston for treatment, and to enroll her in a clinical study looking at better ways to prepare children with Fanconi anemia for a bone marrow transplant. Lehmann said at one month, the treatment and hospital bills for the Rouths total $125,000. Emma is expected to stay in the hospital for several more months.
Lehmann said she's used to fighting for her patients' coverage from private insurers, or Medicaid coverage.
Specialty Centers Used to Insurance Negotiations
"We just work very aggressively. We have a designated person to try and get the insurance approval," said Lehmann.
Thomas Johnson, president of and CEO of Medicaid Health Plans of America, said whether Medicaid patients have difficulty crossing state lines may depend on which part of the country they live.
"I think it just depends on the arrangement the state has," said Johnson.
Although Medicaid is state-sponsored, Johnson explained about 70 percent of Medicaid consumers sign up with a private health insurance plan and some of these plans have contracts in multiple states.
"It might be easier in some of those cases to have an enrollee go to another state," said Johnson.
Stephanie Goodman, spokeswoman for the Texas Health and Human Services Commission, which runs Medicaid for the state, said Emma's situation could be covered.
But first, "we have to enroll the provider (in Boston) in Texas Medicaid and agree on the price," said Goodman.
While the Rouths wait to see how much of Emma's treatment is covered, the family is preparing for tight times when they return.
"We're just barely making it. Once we get out of here and have to start paying for her prescriptions and medical supplies and they really don't want her walking around so we have to think about cabs," said Routh.
The family is stockpiling food now, so they don't have to make many trips outdoors while Emma's immune system recovers. Routh said she is also preparing to volunteer again.
"Even though we've found our donor, we've been so touched having to look for Emma's donor and helping other children find their donor, we're going to continue with the bone marrow drives," Routh said.
"It's a perfect stranger that saved my child," she said. "I could be walking down the street and bump into them," said Routh.