my capability stretches only as far as my understanding

Having spent each summer during my university years working in orphanages throughout Ukraine, I’ve seen my share of children’s homes. Every facility is different - from the buildings themselves to the style of care provided. As predominantly social orphans, these children carry emotional/psychological trauma, feelings of abandonment, and mental conditions stemming from fetal alcohol syndrome and/or chemical dependency. With the rapid spread of HIV and other socially significant diseases throughout Russia and across Eastern Europe, there are now a growing number of children who face a life, not just of emotional damage, but also life with a chronic disease.

The baby orphanage is located just outside of Saint Petersburg’s city center and focuses its care on children 5 days to 4 years old. All of these children were born to HIV+ mothers and were exposed to infection during pregnancy. Some will be HIV+ while others may have escaped infection. Often, their mothers are drug-users, which exposes them to a range of other issues including Hepatitis C, premature birth, and chemical dependency. Mothers or other family members bring these children to the orphanage, but most often the babies are left in maternity wards and at just five days old are transferred there. They live their first four years within the baby orphanage, the only HIV+ baby orphanage in all of Saint Petersburg. After this age, they go to a different orphanage within the city depending on their HIV status and mental/physical condition.

Having been denied access to the orphanage as volunteers, an interview with Dr. Slava, the main doctor of the baby orphanage, was organized. This interview would allow us to gain insight into the services of such an institution as well as develop our understanding of the challenges facing HIV+ children.

I confess I had some bitterness in my heart after the orphanage director said we were not allowed to volunteer, and I assumed a rather pessimistic view of the whole institution. Instead, what I discovered was a truly incredible facility that put all of my expectations to shame. Dr. Slava met with us for about two hours – answering our questions and taking us on a tour. The orphanage has a small pool, an infrared sauna, a salt room that helps with breathing/lung health, a psychotherapy room, and a story room. Children are on a daily rotation between the facilities and receive more focused attention during this time. While Dr. Slava noted that adoption is truly the best option for these children, they will most likely receive better medical care if they stay at the orphanage – a fact I certainly do not question. The structure of the HIV orphanage allows for constant monitoring and special medical support, as many of these children are affected not only by HIV, but by other medical issues as well.

Despite strong medical support, there is still the question of social support. The average child shares their parents with only a few other siblings, while at the orphanage, 15 children must share just one teacher and one assistant. Not only that, but living within a system where everything is brought directly to you – from food and clothes, to doctors and peers, there is little understanding of decision making and the basic life skills needed outside of the orphanage walls. As Natalie and I partner with EVA to develop the children’s project, our focus will not be on the physical needs of orphans, as these needs are generally well met, but rather on developing social programs that teach and challenge these children so that life after the orphanage is not a constant struggle for survival.

In 1996 Dr. Slava was working in a general hospital and noticed an increasing number of HIV+ children being born. At this time there was no proper facility for them, and so, if abandoned by their parents, they were left to live within the hospital walls. Realizing the growing need for an orphanage designed specifically for HIV+ children, Dr. Slava helped establish the baby orphanage. The orphanage currently houses 150 children who were born to HIV+ mothers. All children are provided with treatment depending on their HIV status and rehabilitation for those born with chemical dependency.

Current statistics show 300 HIV+ children living within Saint Petersburg, 140 of which are orphaned. A number of these children have been adopted, and others participate in the Russian foster care system, but in general, rates of adoption are extremely low. One of our key questions was how to tackle the overwhelming issue of stigma and discrimination that exists towards HIV+ people within the Russian Federation. Dr. Slava’s response was to ask our translator what she knew and thought about HIV/AIDS. She responded simply that it is dangerous and should be feared. Case and point – the population we are working with is uneducated. In all honesty, I was largely uneducated before joining EVA. While I cannot say that I wish HIV upon myself or anyone else, I can say that I do not live in fear of HIV, and I have no paranoia around contracting HIV while in Russia. I am educated, and I have the resources to protect myself.

So then what does life look like for the majority of these children who will not be adopted nor will enter the foster care system? Their future is certainly unknown. The oldest among these are in their early teens and live in different orphanages throughout the city. They will be the first youth in Russia to grow up with HIV and to graduate the orphanage system. How will they be prepared to enter the world - to independently monitor their own HIV treatment, to live as adults within a culture that does not accept them? As a believer in education as opportunity, I think much depends on their current orphanage. Those that have HIV, but live with no mental disabilities (namely fetal alcohol syndrome) are able to attend regular public school. Of course they must keep their HIV status closed to protect them from discrimination, but a chance at an education means a chance at a future. For those that live with not only HIV, but who face mental challenges as well, the future is not so bright. They are educated within orphanage schools, meaning they do not receive an equally rigorous or respected education.

The orphanage in Ukraine, where I first began my work in Eastern Europe in 2008, also housed children who were labeled as mentally disabled. While many were born with fetal alcohol syndrome, the levels of disability ranged greatly despite being grouped under the same umbrella. Some children had visible challenges and learning disabilities, while others experienced more emotional effects. Regardless of the level of their disability (and in may cases I questioned that they had any level of disability), they were educated within the orphanage school and not a regular public school. Without a respected education and with the label of “mentally disabled” on their medical documents, these children would face a challenging future with little opportunity of a sustainable career or aspiration. For those children at the baby orphanage who also find themselves labeled as “mentally disabled” they will have to fight the stigma of HIV, the stigma of their mental condition, and life without proper education. It is easy to imagine the perpetuation of poverty and substance abuse in their futures.

Our interview with Dr. Slava was, on some levels, encouraging, especially knowing the level of medical care these children currently receive. On other levels it was rather disheartening. While we knew volunteering on a weekly basis was not a current option due to the political climate, we wanted to know the ways in which we could help the orphanage and the system as a whole. Expecting requests for things like clothes, donations and technology, I was surprised to hear that the most needed support was for the HIV+ mothers of these children.

These children live within a flawed system. Money can give them excellent medical services. Money can give them some sort of education. Money can give them psychological support. But, money cannot give them a family. While the baby orphanage does its best to socialize these children and expose them to the real world, there are some elements of childhood development that are only found within the home. Even if Natalie and I were able to volunteer on a regular basis with these children, it is only a grain of sand in the spectrum of their life experiences. What is needed most of all, is to prevent mother to child transmission of HIV in the first place. If HIV+ women understand the resources available to them and feel that they can access them safely, comfortably, and without any discrimination, then the chances of passing HIV to their children dramatically decreases. Whether they are drug users, sex workers, or exist within other vulnerable groups, these women need to be reached and supported. Their education is a real and sustainable answer that does not simply put a band-aid on such a deeply rooted issue.

I am not Russian. I am not an orphan. I am not HIV-positive. I know that my capability stretches only as far as my understanding. As I daily seek to develop that understanding through E.V.A. and through Sunergos, honest conversations with experts such as Dr. Slava are crucial. While there is no easy answer and no simple fix, it is important to know that the work we are doing through E.V.A. a key piece within the holistic solution of this issue. We will continue to partner with E.V.A.’s efforts to reach these HIV+ women within society’s margins, participating in test and treat events, awareness campaigns and developing the infrastructure and funding that make this work possible. We will also continue to build our Children’s Project, which seeks to improve social programs for HIV+ orphans, decrease stigma and discrimination, and encourage in-country adoption.

If we can find these women and children, daily invest in their lives and in the organizations which serve them, then perhaps we can truly begin to slow the looming crisis of HIV in Russia.

PS - We've been invited to return to the orphanage in May to meet the children and spend some time with them!

Today I miss Ukraine. I miss the children who will always be my children.