Please read the story of the situation that is currently happening to this adoptive family trying to bring home their daughter from China. Imagine having to leave for home without your legally adopted child. Imagine a child finally meeting their forever family, only to be left behind. It is truly tragic. Please take the opportunity to use your voice so that this situation does not continue to occur. It is somewhat lengthy, but I ask you to please read and act. Here's a synopsis of the story:
Upon receiving a special needs referral for the child we were to adopt, Harper (Guang Yue Ye) Scruggs, we were notified that she had recently been hospitalized for pneumonia in both lungs, and that she was on certain medications we knew were used to combat tuberculosis. We asked if we could have a PPD test done, and if we could have access to her chest x-rays, and we were told that we could not have access to those files, but that she had 3 negative PPD tests and did not have tuberculosis. We asked for another PPD test to be done before we travelled, but were told that this would not happen. Being told that it was okay to travel, we went to China to adopt her, and upon completing the adoption were notified that she had indeed been diagnosed in early June with TB. She had by this time been on anti-TB medications (Rifampicin, Isoniazid, and Pyrazinamide) for 1 1/2 months.New CDC regulations had been instituted for China beginning July 1, which indicate that immigrants to the US, including adopted children over the age of two, must undergo a successive series of tests to indicate that they are free of TB.
For someone like Harper, the regulations ultimately require a skin PPD test, a chest x-ray, 3 sputum smear tests, an HIV test, and 3 sputum cultures. Sputum cultures require a minimum of 6-8 weeks for a negative result.Harper has active TB, in that she has a positive PPD and chest x-ray. However, successive x-rays from before medication and 2 months later show a definitive clearing in the lungs, indicating that the medicine is working. Her sputum smears are negative, and she has begun the sputum culture test process. In addition, she had been hospitalized 2 months prior to our journey, and at that time also tested negative with her smear tests. She was given a throat swab sputum culture, which after two months also proved to be negative.
To gain an immigrant visa to the US, Harper needed to apply for an I-601 waiver, which allows the state department to issue a visa even though there is an active case of TB. The CDC is given the waiver application and puts forth an opinion to the USCIS (Homeland Security), who then decides to grant or not grant the visa. In Harper's case, the CDC decided that the previously performed throat culture was not admissible as it was a slightly different type of test, there was only one performed, and it was not from an approved CDC lab (of which there are 5-10 in all of China). The waiver is still technically in process and can be reevaluated upon completion of the sputum cultures, in about 2 months.
In making its decision, the CDC decided that the following facts did not outweigh their protocols: 1. The hospital lab where the tests were originally performed is the Guangzhou Pulmonary Hospital. It is very sophisticated and respected, with an emphasis on lung issues. The panel physicians sometimes send tests to this hospital when they require a closer look with better equipment. However, it is not a CDC approved lab and so tests from here are not considered. 2. TB generally is not considered infectious in children, as children don't have the lung power required to expel the germ. In a conference call held on August 7 between the CDC, Department of State, congressional offices, adoptions agencies, attorneys, various independent doctors, and children's organizations. During the call, the CDC asked a renowned expert to discuss the issue (Dr. Jeffrey R. Starke, M.D., FAAP of the Texas Children's Hospital), who immediately and definitively stated that there were only 2 reported cases in the world of a child having been known to transmit TB and that he could comfortably state that more than 99% of children with active TB are not contagious. He stated that the culture tests on children are not reliable and implied that they are of little use in these situations.
3. People with TB are generally considered to be non-contagious within 2-4 weeks of taking medication. Harper, at the time her waiver was denied, had been on medication for 2 months.4. No other options were considered, such as masking her or allowing her home in a private plane, and then quarantine.
Because we have a son back in the US, and because we both need to work in order to pay our bills, and because we had no savings or credit left due to the costs of the adoption itself, we were forced to return home without our daughter. An extended stay for either of us would probably mean the loss of a job. We located a local family that agreed to take her in, and so Harper was abandoned for the 4th time in her young 4-year life.
Any number of people in the Department of Homeland Security, the CDC or the Department of State could have fixed this with a single phone call,and in fact still can. Natural born children of US citizens are not required to undergo these medical exams to get back into the US, but these poor orphans, now children of US citizens, must languish in foreign countries and be denied access to US healthcare. It is discriminatory. The drugs Harper is currently taking are known to cause liver failure. A blood test has to be administered every two weeks to check the liver function. We cannot even be with our daughter to make sure that her medicine is working effectively and there are no life threatening side effects.
We move forward now with several goals. First and foremost, we wish to bring our daughter home. Second, we want to show the world what a poor law this is, and work to get it changed to help all of the other children affected by these regulations. One method of change is to pass the Foreign Adopted Children Equality (FACE) Act. ( S.1359, H.R.3110 which will give adopted children abroad immediate US citizenship. If this legislation had been in place Harper would not have been treated as an immigrant and would have bee allowed to return to the US with her parents. This legislation should come under consideration in the House sometime in the Fall. Please contact your senators and representatives on Harper's behalf. http://www.house.gov/house/MemberWWW_by_State.shtml or http://www.senate.gov/general/contact_information/senators_cfm.cfm.
Third, the Joint Council has been working with Dr. Dana Johnson and other stakeholders including Quad A, NCFA, and EACH as well as Congressional Offices, on the issue of the CDC TB protocols. Together they have actively advocated with the United States Dept of Homeland Security, the U.S. Dept of State Office of Children's Issues and the Center for Disease Controls and Prevention on the new TB protocols. However, at this time no positive change has been made by the CDC.
As each day passes, more and more children and families are affected by this issue. Our understanding is that there are dozens, perhaps hundreds, of cases similar to this in Ethiopia, where the regulations have been in place since Spring In an attempt to gain support and advocacy on this issue in broader terms, Joint Council has launched a petition requesting that the CDC change its protocols and more appropriately protect the health of America. The petition can be found at http://www.gopetition.com/petitions/build-families-not-barriers.html. We encourage you to sign the petition and distribute it widely. Through online social networking, the petition has gained over 3000 signatures in only a few days. Finally, we would like to see changes at the CDC, as the current regime has either judged adopted children not worthy of the same rights and benefits as other Americans, or worse, have absolutely failed to consider the fundamental question of who it is they are writing these regulations for. These are children, not tiny adults, the same regulations should not apply.
A recap of our journey can be found at our blogsite, http://jayscruggs.livejournal.com/. Jay Scruggs and Candace Litchford can be contacted at firstname.lastname@example.org and email@example.com, respectively. At our blog a video of the moment we had to abandon our daughter can be viewed, and we think it is imperative that this be seen to truly understand the ramifications of this case.
James Scruggs and Candace Litchford