Chernobyl Children's Project International

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.

chernobyl: the life saving gift at work

I can't look at this picture without imagining how I might feel to see my own child in an intensive care unit, hooked up to tubes and wires and hissing electronic equipment.  Only days ago, this child's parents were in the situation all parents dread:  Not knowing if their child would live or die.  Today she lives, thanks to a partnership between American and Belarusian surgeons and a life saving gift.

In October, I wrote about the Portland grandmother and the unusual way she raised funds to help kids needing heart surgery in Belarus. We combined her donation with one from a Rotary Club to purchase a Somanetics Cardiac Oximeter.  The oximeter just arrived in Belarus with a volunteer surgical team.  (The device allows surgeons to non invasively monitor oxygen levels in a young patient's brain and kidneys while they are on bypass during surgery. If the heart fails, the surgical team can intervene before irreparable damage is done.)

This equipment will save the lives of as many as 175 children a year.  We thought you might like to see this photo of the first one.  Pictured here,  Dmitry Leskovsky MD  (of the  National  Children's Cardiac Center in Minsk) and William Novick MD performed what is called a "Stage 1 Norwood" on the child.  The operation is one of the more complex performed in the USA or Europe.

As I reported last week, our cardiac surgery program has saved the lives of close to 300 children in Belarus, and has provided training and equipment that reduced the waiting list for children's heart surgeries from 7000 to 2400 under 5 years.  This spring, we will bring the program to Ukraine, where 50% of children who need complicated heart surgeries do not get it.

But today, we are celebrating the life of this one child.

chernobyl heart: i want to save a child's life for christmas

It's only December 1, but I already know  what I want for Christmas:  I want to save one child's life.  I'm hoping you will help me -- I've never asked you for anything before, have I?

This spring, Chernobyl Children's Project International will send an American medical team (led by Dr. William Novick, MD) to Ukraine.  They will operate on children who have very serious heart conditions -- genetic defects that have dramatically increased in incidence since 1986.  Without an operation, each of these children will die.

In 2008, we will sponsor 4 such trips to Ukraine, and save many young  lives.  But I would like to be personally responsible for just one life!  You can give me my wish by clicking on the DONATE button on this badge (either here or above) to make a secure online donation.  If I am able to raise $1,500, I will post a photo of "my" child this April.  If you prefer, you can donate by clicking on the green DONATE NOW button on the upper right hand of this blog -- here's how your donation helps.  Spread the word by clicking on "email this" or "share on Facebook" at the end of this post.  If you're a blogger, email me and I will send you code for my badge, or tell you how to create your own.

Our children's heart surgery program in Belarus has saved almost 300 lives.  Dr. Novick's surgical team focuses on both operations and training.  Since the start of the Belarus program, the children's waiting list for heart surgery has plunged from 7,000 to 2,400 patients.  The program has direct and measurable results.  I know we can bring this life giving success story to the children of Ukraine.

Click here to read the moving story of how supporter Judy Bevilacqua responded to young heart patients in Belarus.  The "cardiac kids" photo album on the left side of this blog shows some of the kids who have received life saving operations.