Friday, September 3, 2010


I hope I'm not disturbing or depressing anyone with my updates. I have just really been affected by a lot of really difficult-to-talk-about (and/or see) issues lately and I think it's important for people to know what it's really like here. If it is upsetting you, please read the next section with caution.

There is a little girl at the baby home named Elizabeth. Elizabeth is about a year old and has had a very difficult life so far. Elizabeth was brought to Forever Angels after being abandoned in the hospital when her parents found out she had been born with hydrocephalus. Hydrocephalus is a condition in which the fluid that surrounds the brain does not drain properly. Because of this, the fluid continues to build up around the brain, expanding the size of the child's head. Elizabeth's head is about twice the size of a normal child's head (it looks almost as if she has a big ball growing in the top of her head. It's so large that she cannot support it on her own, and probably never will be able to.

To make matters worse, besides the physical size of her head being so large and uncomfortable, the fluid build-up also causes brain damage. Children with hydrocephalus often become blind and deaf, if they survive at all.

Apparently, hydrocephalus is common in Mwanza. No one knows exactly why, but Amy has a theory that it is caused by the high levels of mercury used in the mines in this region. The thing about hydrocephalus is, is that it is not only preventable (regulation of mercury perhaps), but it is also treatable if caught at its early stages. If caught early enough, the child will not become brain damaged at all. Want to know how easy it is to detect hydrocephalus in newborns? It is as simple as measuring the circumference of the infant's head at birth. If the head is too large, put a shunt in to drain the fluid. Simple as that.

Unfortunately, doctors and nurses here do not do this upon the birth of a child and instead wait until it is too late and the child's head is visibly abnormal.

Having Elizabeth at the baby home has really shed light on this issue in Mwanza. Currently, there are about thirty babies in the hospital waiting for shunt surgery to cure their hydrocephalus. Some of these babies are six months old and have been there since birth. The longer you wait to do the shunt operation, the more brain damaged the child becomes. The surgeons at the hospital do one surgery a week for free. When asked why they don't just do all these baby's surgeries at once and save all their lives and prevent brain damage, the surgeons said they don't like doing shunt surgeries because they are "boring." That's right. You read that correctly. They think that shunt surgery is boring. "But it's a quick, simple procedure that will save lives!"

"Yes, but it is boring."

The doctors won't do the procedure unless they are paid. Want to know how much the surgery costs? $250 (and it used to be $50!)! Two hundred and fifty dollars is what a lot of people pay for a pair of jeans or a nice dinner with friends back at home. Here, $250 could literally save a life and prevent major brain damage. Maddening.

Because of Elizabeth and her prior frequent visits to the hospital (she has had the shunt surgery), Amy became very involved in the children with hydrocephalus at the hospital. She is now trying to raise enough money for all 30 surgeries to be done. The problem is, however, that once these thirty surgeries are done, there will be 30 more babies born with hydrocephalus because it's an ongoing issue here. Because of this, Amy has given me and another volunteer the job of finding a continuous donor for these children. The last few days we've spent a lot of time looking up hydrocephalus organizations in the US and Europe and we plan on emailing them as soon as possible. If you know of anyone who might be interested, please let me know.

For more information about what hydrocephalus and other patients have to deal with living in the hospital, read my next blog entry. I thought I'd break them up to make for easier reading. :)


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