GIBSONIA, Pa. — A bright girl with dark curls crowning her face, Matisse Reid has been sick all her life with a rare disorder that prevents her body from absorbing nutrients.
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She nibbles on beet salad for lunch, but Matisse’s real meal — fats, nutrients and fluids — come from an intravenous line running from her backpack to a vein in her stomach. After six years of IV feedings, the pressure on her liver is becoming life-threatening and she is running out of usable veins. Often, she is doubled over with chronic pain and vomiting.
After months of fundraising in their native New Zealand, Wayne and Jodee Reid, Matisse’s parents, packed up their family of six and traveled 8,500 miles to Pittsburgh for a multi-organ transplant that could save their 6-year-old daughter’s life.
As they wait for a stomach, bowel and pancreas to become available, the Reids must draw from $260,000 they raised, money they are counting on to carry them through the years it will take Matisse to recover from her operation.
Like other foreign families in the United States to obtain lifesaving medical care, the Reids are here on tourist visas, which do not allow them to find jobs. Families say that makes it more difficult to sustain themselves on the long journey of saving their children’s lives, adding to their anxiety.
Trying to do what's best
“At the end of the day, we’re just parents trying to do what’s best for their children,” Jodee said as Matisse, who is often in pain, played upstairs in the home they rent in this Pittsburgh suburb.
The Reids arrived in Pittsburgh in January, expecting to spend about three years here for Matisse’s operation and long recovery.
But with the wait for the transplants expecting to take eight months to a year, they now realize they may have to stay closer to five years — and it’s unclear whether the money they raised will be enough. If they spend only $60,000 annually — a tight stretch for a family of six — the money will run out in about four years.
Often, coming to the United States is the only choice for families seeking complicated transplants, leaving people who have always worked dependent on charitable people and organizations. On rare occasions, they are forced to return home.
“There’s no provision whatsoever, even for humanitarian grounds, to allow these people to work,” said Bruce Larson, director of the international personnel office at the Mayo Clinic in Rochester, Minn., which treated about 8,000 foreigners last year at its hospitals, including several hundred children.
The federal government does not track how many of the millions of people who come here on tourist visas are seeking medical care.
Help may be delayed
Working with the Mayo Clinic and St. Jude’s Hospital in Memphis, Tenn., Rep. Steve Cohen, D-Tenn., said he plans to sponsor a bill that would grant work permits to parents of children who need more than six months of medical care.
But it could get hung up in the bitter debate over immigration reform. Cohen wants to attach his bill to the broader reform legislation, which collapsed in the Senate in June.
“I should hope it would have support. It’s logical, it’s humane,” Cohen said. “I can’t imagine anyone thinking this would be a security risk. It’s just a humanitarian issue.”
Matisse was born on Christmas Day 2000 with chronic idiopathic intestinal pseudo-obstruction, a disorder in which the small or large intestines lose their ability to contract and push food, stool and air through the gastrointestinal tract. It affects fewer than 200,000 people in the United States and is most common in children and the elderly. The cause is unknown but symptoms include severe bowel problems — from vomiting and diarrhea to chronic pain.
Children’s Hospital of Pittsburgh, where Matisse is awaiting the triple transplant, treats fewer than 30 international patients a year.
Years of lobbying convinced the New Zealand government to cover the $1.4 million cost of Matisse’s planned transplants. Independently, the Reids also raised nearly $260,000 in donations to sustain Matisse and her three siblings — Rachel, 15, Kalani, 9 and Fraanz, 2 — during the years it will take Matisse to recover.
“It’s only the highly motivated or those with some resources to raise money to come to another country, whether it’s England, France or the United States, can come,” said Dr. George Mazariegos, director of pediatric transplants at Children’s Hospital. “Right now the care is very disproportional to the need.”
Transplant patients studied
Intestinal transplants have been done only about 1,300 times since 1989, nearly all in the United States, Mazariegos said.
A study by a group of doctors in Columbus, Ohio, found that of eight children who underwent such transplants, two died a short while later. Of those who survived, the study found their lifestyles were significantly improved and at least three had normal bowel movements within 18 months.
For the hundreds of foreigners who come to America every year seeking medical care, the issue of finances is ever present. Sometimes, medical care can take years, putting families in a financial bind.
According to immigration attorneys, there are two alternatives for foreigners to receive work permits, and both are rarely effective.
A family can open a small business. However, to ensure the business is viable they must invest at least $100,000. In this case, the owners of the business would have their visa status changed and they would get working papers.
Getting hired by a research institute, such as a university, can also provide a work visa. However, there are just a few thousand such visas issued annually and they normally expire within days of the lottery. Nonprofit research institutes, such as hospitals, do have an unlimited number of work visas that they can issue annually and a foreigner hired by such an institution could get working papers as well.
Wayne Reid is a carpenter by trade and desperately wants to work — to keep busy and earn money for the family. He said he was offered under-the-table odd jobs but he refuses to do anything that might jeopardize his daughter’s treatment.
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