Having found their “diamond in the rough,” Beth and her family encountered further obstacles on their journey toward treatment and care for their daughter.
I am still amazed at my daughter’s resilience. I remember praying before we met her and asking God to keep her healthy until we got to her. I knew she had been living with HIV for three years without treatment and had made it to adoptable status, but nothing more. When we brought her home, her health was generally good, but her body was riddled with various infections. It took almost two years for her to transform into a strong, healthy, growing little girl.
But what really brought out my momma bear instinct was when we started the process of getting her registered for anti-retroviral treatment. To be honest, the more I learned of her past and what it would take to give my daughter a future, it made me angry.
Discovering HIV Status in China
According to Chinese law, if a person tests HIV positive the results must be submitted to the Center for Disease Control (CDC) and logged into government records. Sometimes this testing happens at birth if a parent is a known carrier. Otherwise the first base of testing often happens when a child applies for school. All Chinese children undergo blood tests before they can enter government institutions. This is when some children who test positive for HIV are abandoned by their families.
Babies with HIV
That wasn’t our daughter’s case. She’d been born in a hospital to a mother who falsified her information and left without her. Furthermore, her birth documents noted that she’d been tested for HIV and found positive.
For children in a situation similar to hers, there are medical advances that can treat HIV at birth enabling the child to live an HIV-free life. But sometimes testing on newborns results in false positives because they are carrying their mother’s antibodies. It isn’t until testing at 18 months old, that a child is determined in fact to be a carrier of the virus. (When a child is 18 months old, the mother’s antibodies are no longer in her baby’s blood system.) If a baby is born HIV negative, but an HIV-positive mother decides to breastfeed, then the child will likely receive the virus through her milk.
Even though our daughter tested positive for HIV, her test results went unregistered. She immediately went to an orphanage where during yearly check-ups she received more tests verifying her HIV-positive status. My anger boiled because by Chinese law these results should have been sent to the local CDC or recorded in government documents—but they weren’t. The results only existed in her adoption file. The hospital, the police officers who cared for her in her first few days of life, the orphanage, and government doctors all knew her status, but treated it as though it didn’t exist. This neglect would make our road to treatment a bumpy one.
Who Will Claim Us?
HIV seemed to be a special need that we could manage while living in China, whereas in some cases, if a child needed specialized surgeries or care for severe physical disabilities and impairments, we would not have been able to continue our long-term service. Under the World Health Organization (WHO), China receives free anti-retroviral medication (a treatment that essentially puts the HIV virus to sleep so that it can’t multiply or destroy white blood cells) for people living with HIV. We believed our daughter would have access to this free care.
In order to receive this treatment, our daughter needed to be tested again, found HIV positive, and registered with our province’s medical system. Sounded easy. We followed the guidelines, but when she tested positive our province didn’t want to claim her in their databases since she’d been born in another province. No province wants to add more HIV cases to the CDC documentation, especially if the individual was not originally from there. It is shameful. We began to wonder if we could indeed care for our daughter and her needs.
Being Found under the Veil
With the help of a local social worker and Elim staff we began following the rabbit trail that was our daughter’s medical history. We hoped we could transfer her original test results between provinces, but because those test results were not reported we were repeatedly refused the registration needed for treatment. No one wanted to claim her.
That’s when we connected with the Beijing CDC and learned that there were no reported cases of children living with HIV in our daughter’s home province at all. My anger turned to anguish. I realized our daughter was under China’s HIV veil. If she had been hidden under it, how many other children and adults were living unreported and untreated in order to save face and have low numbers reported to the CDC?
By God’s providence, via the pressings of the Beijing CDC and Elim staff, we celebrated a small victory—registration in our province and entrance into the medical system. The process took four months. If getting into the system was such a challenge for us with our connections, I can’t imagine what it might be for others.
Getting into the system was our first hurdle, but getting the month-to-month, ongoing care that our daughter needed would have even greater obstacles.
Coming next: “In the HIV Medical System.” Now in the medical system and on our way toward treatment, we journeyed further into the shame, ignorance, and difficulties of hiding those living with HIV in China.
Image credit: byrev on Pixabay
Beth Forshee studied journalism and public relations at Baylor University in Waco, TX and has been serving in various aspects of ministry to China for over 13 years. Her love for China’s culture and people started on her first short-term trip in 2001. Later Beth and her family served in …View Full Bio
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