video: vesnova children's mental asylum -- another chernobyl legacy

This is a short video that Chernobyl Children's Project International made for the 20th anniversary of the Chernobyl disaster. You can watch it now and, at the end of the post, write a comment to let us know what you think of it.

The video speaks for itself, and I have two personal comments. 

First:  In October 2002, I visited the Vesnova Children's Mental Asylum (located in the Mogilev region of Belarus) for the first time.  I lived and slept there, as I have many times since. I can personally attest that since 2002, CCPI has improved greatly the quality of life of kids who live there. As an unpaid volunteer and a board member, I value my professional reputation and simply would not stay involved if this were not true.

The condition of the building where the children live has improved dramatically since my first visit.  This is because of a massive volunteer work force, provided by citizens of Ireland, that you can read about here.   Organizations like the Toothfairy Foundation and Vodafone donated costs of materials.  Monthly training and hands-on care from Irish and American medical professionals improved child care practices.  And this was possible because of strongly motivated peers in Belarus.

We know (because you've told us) that you strongly support our programs that take children out of orphanages and place them in loving homes of their own.  We agree and these programs will continue to be a strong focus entering into 2008.  But the sad fact is that that, while these programs are an important source of hope for  "typical" children, change will come more slowly for children with intellectual disabilities.  (This is historically true, including in the United States.)  So, we think it is very important to help the forgotten kids of Vesnova, while at the same time investing in the long view. 

What also strikes me as I watch this video again is the disturbing image of Sasha, the little girl with the unusually large head.  Sasha lives in the Gomel region of Belarus.  Sasha's family is one client of our hospice program.  This program provides medical and social support for families with the most seriously ill children.

Sasha has a condition called hydrocephalus.  The common name for this is "water on the brain," and in the US it affects one in 500 births. It's a common birth defect, more common than Down's Syndrome.  Since 1960 there has been a treatment for hydrocephalus, and while it remains a serious condition in the USA and Europe one does not see children like Sasha.

I've seem many children like Sasha (in various degrees)  in Chernobyl affected regions. Why?  Radiation? Deficiencies in diagnosis or treatment?  Nutrition? I don't know, but would like to know more.  In fact, if you know a medical expert on this birth defect, I would like to hear from them via email.)  What I do know is this: Children with hydrocephalus, left untreated, suffer tremendously in their short lives. I've witnessed this myself. Imagine nurses trying to carefully turn the heads of tiny children with huge skulls . . . turning to prevent pressure sores, while the children moan in pain and the nurses themselves weep. 

The unique situation of Sasha, however, does not come through in this video at all.  Sasha's mother and father feel blessed to have her.  They never considered handing her to an orphanage.  They call her an angel and rush home from work to see her. Sasha's dad,  Vitaly, says he can't imagine life without her.  He describes the music she likes, how she responds to it, how they spend their day.  As I look at her, I have to admit I hope she has no consciousness.  But I get caught up in his belief.  He sees moods, desires, preferences for certain foods, particular clothes.  He talks about her like any of us would talk about our kids.  After visiting them in April, my colleague Sherrie  and I feverishly shopped for the specific foods and clothing Vitaly told us Sasha would like.  I'm not sure what inspired our sense of urgency:  Sasha herself, or Vitaly's devotion to Sasha and his belief that it mattered.

Vitaly's singular focus on his "angel" and lack of self pity are are so inspiring.  I think it would be a great subject for another film.