Courtesy Jay Scruggs
Harper Scruggs, who was treated for TB, plays in a pool at a hotel in Beijing, where she spent two weeks with her adoptive parents while waiting for the CDC to clear her health for a U.S. visa.
A new rule from the Centers for Disease Control and Prevention has some Americans leaving China and Ethiopia without the children they adopted there.
The new CDC protocol requires that internationally adopted children over the age of 2 be tested for tuberculosis in the country of origin before the U.S. can grant a visa. If they test positive, they must be treated and determined not to be infectious before the CDC will allow them to travel to America.
Tuberculosis is on the list of diseases for which an immigrant can be denied permanent residency. But until recently, that prohibition was generally only applied to adult immigrants and children over 15. The rule didn't apply to children under 15 because the vast majority of infected children are not contagious and are highly unlikely to transmit the disease.
Jay Scruggs and Candace Litchford, who live in Alexandria, Va., were aware of the CDC's new rule, and they had asked the orphanage in Beijing if the little girl they were about to adopt had TB. The orphanage said the 4-year-old had serious bronchial problems, but assured the couple she did not have TB.
Litchford says they quickly bonded with the little girl, whom they named Harper, when they flew to Beijing in early August for what they thought was a journey to bring her to the United States.
It was more about Harper getting used to her new parents, Litchford says. "She has to learn how to trust us."
Unfortunately, the adoption agency had overlooked a vital piece of information in Harper's file: She had been treated for TB.
When Litchford and Scruggs met her, Harper wasn't coughing and didn't appear to be sick. But because of the new CDC rules, Litchford and Scruggs needed to get a waiver showing Harper was not contagious. Those tests would be determined by doctors designated by the CDC, putting Harper through the same procedures that had already been conducted by Chinese doctors, according to Litchford.
Harper already had spent a month in the hospital on IV treatment, and one month in treatment at the orphanage. But the CDC wanted TB sputum cultures that are difficult to process and can take several months to show results. Scruggs and Litchford have another child at home and jobs they had to get back to, so they had to leave Harper with an American foster family in China.
Because children under 15 weren't tested for tuberculosis in the past, cases among children were often undetected. Dr. Ken Castro, head of the CDC's Division of Tuberculosis Elimination, says the agency became concerned because of a number of outbreaks of the disease among immigrants in the U.S.
The children involved were usually living with adults who had tuberculosis. "Not being able to identify them then resulted in the local health department having to deal with the consequences," Castro says. "If the children were in school, [the local health department] would have to investigate other schoolchildren."
There is no hard-and-fast cutoff age for when children become infectious, according to Dr. Jeffrey Starke of the Children's Tuberculosis Hospital in Houston. "The issue is not the age of the patient. The issue is the kind of tuberculosis they have."
Infectious TB in children is so rare that Starke's hospital doesn't isolate the vast majority of the children with TB, he says. Starke says the hospital also tests employees who treat infected children, and no transmission is occurring.
Castro of the CDC agreed that infectious tuberculosis is rare among children.
Starke thinks the CDC has gone too far.
"From not providing children any [TB] services, it's swung over to the side of making rules that are, in fact, preventing children from coming into the States, children for whom it is completely safe," Starke says. "In fact, it's in their best interest that they be in the United States so they can be appropriately diagnosed and treated."
The goal behind the new rule is to better identify cases of TB and get people into treatment, says Dr. Martin Cetron, director of the CDC's Division of Global Migration.
"It's not about exclusion," says Cetron. "It's about finding TB cases that might not have been found until much later, when the disease might be much worse, or the disease has spread to other people."
Cetron says the CDC intends to meet with adoption groups, parents and tuberculosis experts to come up with a smoother process. They're considering, for example, making sure the child has been diagnosed and cured before the adoption is cleared and parents come to pick up their children.
NPR learned Sunday that the CDC has granted Harper a waiver, and she will be heading to the United States soon.
Candace Litchford's only worry now is that Harper has been moved around so often between foster families and the orphanage that it may take her a little while to trust that this time she's really home. "You can't explain government to a child," says Litchford. "You can't explain CDC regulations to a child."
Harper's situation may be somewhat different from other internationally adopted children seeking a U.S. visa. She had already received treatment. In many of the developing countries where the children are being adopted, the diagnostic and testing capabilities don't exist. How the U.S. government handles the cases involving untreated children is less certain.
International adoption groups are concerned that the situation is likely to discourage Americans from adopting in countries where tuberculosis is endemic. Dr. Jane Aronson, CEO of the Worldwide Orphans Foundation, says internationally adopted children should not be considered immigrants. She's hoping Congress adopts a proposed law, called the Foreign Adopted Children Equality Act, that would make children citizens at the time of the adoption in the country of origin.
In the meantime, tourists and other visitors to the United States, and children of any age born to Americans living outside of the United States are not screened for TB when they enter the country. But scores of adoptions in Ethiopia, the Philippines and China could be stalled because of the rule.