The HIV children: an introduction

Today was a very exciting day because Theresa took me to meet the HIV children! There are two groups of children here at SRH: the leprosy children and the HIV children. The leprosy children are all completely healthy and live here on the compound with their families. One or both of their parents is categorized as a “class II disabled” (paralyzed limb, severe disfigurement etc), and would have difficulty living a dignified life on the “outside.” The community here provides the family with housing, work, and schooling for the children. These families are welcome to live here forever, if they so desire. The leprosy kids are really fun, and are always romping around all over the place (see “Pongal”).

The HIV children, on the other hand, are pretty self contained. All of these children contracted HIV at birth, and have lots their parents to AIDS. Many of the children were brought to Sivananda straight from their parents’ (usually the mother’s) deathbeds. Some of them were pulled of the streets.

They are secluded from the leprosy children and the majority of the community because they are very susceptible to outside infection. Additionally, they are all orphans and don’t have any family that could or was willing, to take them in. They don’t get many visitors.There are 30 orphans total: 17 girls and 13 boys, but SRH recently got a grant to increase that number to 50. They are building a brand new boys home next to the existing home.

The children’s home is all inclusive. It is a large rectangle with bedrooms arranged around a the perimeter of a courtyard on the first floor. (So even if you are inside the building, you look up and see the sky.) Additionally, the first floor contains medical examining rooms where the children see their doctor, Dr. Sugena, every day. They also see a psychologist once a week, and the SRH dentist once each month. They have three women who care for them, and a teacher. All of the caretakers are also HIV positive patients.

The second floor contains the kitchen, the eating space, a recreation area and the classroom. The children that are below 4th grade are taught by a teacher on the compound. Above 4th grade the children go to public school. One of the girls, who is 15, will be starting college in the fall (you start college after the completion of 10th grade in India). Each child has a school uniform, a set of play clothes, a set of pajamas, and a pair of shoes.

Outside the building the children have their own play area with two swings, a slide, and one of those merry-go-rounds that makes me a little nauseous.

When I got to the home, all of the children ran out of their rooms and stared at me, whispering quietly in Telugu. I stared back, taking in the gravity of their little lives. Most of them are pretty young. The youngest is 4, the oldest girl as I mentioned is 15 and the age distribution is pretty stable between those two ages. It was quiet for a minute until one brave girl stepped forward and said, “name?”

I introduced myself, “gina!”

“Thanmy” she answered.

All of the children chorused “Hello gina” and I said,

“Hey, do you guys like games?”

We played goats and tigers, which is a game the leprosy children taught me. Its basically like playing tag, except if you are a goat, and get tagged by a tiger, you have officially been eaten—and you are out. The game goes on until the last goat standing becomes the next round’s tiger. Its really convenient to play inside the building because there are clear boundaries in the courtyard, and everyone plays together really well. I can’t remember the last time I had so much fun (…probably Pongal).

These children are absolutely amazing. I am so excited for all my new little friends.

Tuesday January 13th

Today I had many misadventures getting my internet hardware. Kiran, the IT guy, is super unreliable. He said he’d be back in an hour (3 hours later I called) and then another hour. And then ten minutes (an hour after that), 10 minutes more. But I got it. I finally got it. My little TATA cellular modem. And it will be activated by Thursday at 4’oclock. And then I will have my own internet! Yessss!

We have a patient right now who is pulling at my heart. She is an HIV/TB widow, age 30, and she is really sick. Her CD4 is 30 this week, and she seems to be struggling more each day. The state of HIV in Andrah is really terrible. The major mode of transmission is hetero-sexual, through commercial sex workers. I’m hearing the same story over and over again. Man goes to prostitute, and contracts HIV (according to 2007 data, one in five men over the age of 18 in A.P. has been with a commercial sex worker at least once in the last 12 months). This man then brings HIV home and his wife contracts it (monogamous married women make up over 30% of HIV cases in Andrah) . Unaware of the virus, the wife may become pregnant, and without seeking treatment can give birth an HIV positive child (6% of A.P. HIV cases are children). The husband dies, leaving an HIV positive widow who must now bear the social stigma (when your husband dies of AIDS, everyone around you knows/assumes you have it too). She is oftentimes shunned from her family, work and community, and must find a way to feed her children. And sometimes these women turn to prostitution.

Is your heart broken yet? Because mine is feeling the strain.

So the patient that I have been seeing is facing this right now. She has no job, she has been abandoned by her family and is really struggling financially. She is very beautiful, and has a wise, proud face that has been ravaged with struggle. The really hard part is that she has three children, and the youngest one (age 6) is staying with her at our ward. He is just the cutest thing, and I am very worried about him. Rubina is our HIV counselor (and has been a very good friend to me). She educations patients about their conditions, helps them find jobs and is currently looking for some kind of program for this woman’s youngest child, or at the very least to find a job for the oldest child (age 11) who can to support the younger siblings. If this woman dies on us, the boy has to go somewhere, and we don’t have a “where” yet. The woman’s three children have not been tested for HIV, she won’t allow it. She is holding onto the hope that after she dies, someone in her family will take in the children. If it is confirmed that the children are HIV positive, it is even more unlikely that anyone will. Not only is the social strain a huge burden, but so is the medical condition.

So this little boy has become my buddy. I brought him a ring pop today that was red. Red is his favorite color. I am worried about him spending so much time in the ward alone, while his mother is sleeping, I think he’s starting to realize what is going on. During my lunch we go outside and play hopscotch, and today we flew a yellow kite. I told Rubina that if his mother dies, and we don’t have somewhere for him to go, I want him to stay with me in Guest House 1 until we do. (Which I’m sure would not go over too well with Mrs. Rao and Dr. Hrishikesh.) Rubina said she’ll keep on it.

Rubina and I have little talks about this stuff. Apparently sex education in public schools is a hot political issue. Currently, there is no formal education system in place for students in India relating to STI’s, HIV/AIDS or sex until the graduate level (M.A. equivalent). Sex, and diseases that are related to sex, are a cultural taboo. According to what I’ve been reading, in the last five years its gotten much better, and people are starting to be more aware. However, we still have patient after patient claim they got HIV from drinking bad water, or eating food prepared by an “unclean” person. I know lots of people in India are working very hard to combat AIDS, but this ignorance makes me crazy. Millions of people are dying in this country of an uncurable, but preventable disease, however, we can’t talk about it at school because it threatens the culture? I think AIDS is already threatening the culture.

So at dinner tonight the little boy and I took a survey of everyone’s favorite colors. His, as I mentioned, is red. His mother’s favorite color is maroon. Mary’s is orange. Marta’s is pink. Uncle’s is white. The older patient who wears a big dot chose purple. Larshmi’s is blue. Shobba likes pink. Marheswarie couldn’t decide between light green and yellow.

After dinner the girls busted out the henna cone and had at my left palm. Everyone took a finger. Shobba wrote my name in Telegu on my middle finger, Larshmi drew flowers on my palm. Maheswari is a henna-star and drew some beautiful designs up my ring and pinky finger. The little group of Indian women that I hang out with are so funny. They gossip and nurture and take care of me just like my friends back home (well, maybe not just like back home, but it sure is great to have friends). My henna art is all part of development into a fashionable Indian woman. Next lesson: the sari. In the meantime, henna smells like cinnamon dissolved in vinegar.

Tomorrow is Pongal, so I don’t have to work. Pongal is the Telegu celebration of New year. I don’t know much about it, except to wish people “happy Pongal” and that there will be a lot of kites. Which should be cool.