Hydrocephalus: why care needs to change

17 08 2011

Over the last two years Joint Council staff has met many children throughout the world affected by Hydrocephalus, a debilitating and sometimes fatal special need.  In our travels and work we’ve met Addison from Kyrgyzstan who has succumbed to the disease; Rene in Haiti; Josh in South Africa; and most recently Sun Cheng in China.  All of these children were orphaned because their biological family was unable to care for their disease. All of these children will most likely meet an early death due to their disease.  Many of them will pass slowly and alone.

On Tuesday, August 2nd Joint Council staff attended a Congressional Hearing at Subcommittee on Africa, Global Health and Human Rights focused on Hydrocephalus.  Hydrocephalus is the excessive accumulation of fluid on the brain and because of the pressure of the excess fluid, if it is left untreated it can cause brain damage and in many cases death.  The need for improved solutions to Hydrocephalus is imperative in our world today; with 1 out of every 2,000 children in the developing world being affected and more than 400,000 new cases of Hydrocephalus in Africa last year alone.

The most common strategy for treating the disease is placing a shunt, a tube implanted from the brain to abdomen, to drain fluid from the brain to the abdominal cavity. However, typically a shunt will need to be replaced up to five times in a child’s lifetime.  Oftentimes, due lack of resources, transportation difficulties, lack of accessible healthcare and various other factors, children often pass within the time it takes to get to a hospital to have the shunt fixed.  Clearly, another solution is needed.

The three Congressional Hearing panelists; Dr. Benjamin Warf, Dr. Steven Schiff, and Jim Cohick, have developed a groundbreaking surgery that has saved countless lives in Uganda. The new surgery uses an endoscopic treatment paired with an ETV/CPC procedure that reduces the tissue which creates the excess fluid. Although the research is limited thus far, the new treatment has a 75% success rate and the need for a shunt has been eliminated.

The panelists provided several recommendations to the international health community to reduce the number of cases of Hydrocephalus and promote sustainable strategies to treat the disease. They include strengthening health systems training, empowering local surgeons to treat children with Hydrocephalus, facilitating research to find the best practices to prevent post infection, and passionate care and concern. The panelists also spoke of the need for more neurosurgeons in developing countries, most specially Africa; in the United States there are 3500 neurosurgeons, in Uganda there are four, and in Congo there is only one. These staggering facts, and the children lost each day due to the disease, should motivate the international public health community to not only educate themselves about Hydrocephalus but also begin to provide resources so that more children can be saved and given a chance to live and thrive in a family.

For more information regarding the Congressional Hearing and the needs for better treatment options please to go:

http://cure.org/blog/2011/08/cure-testifies-on-hydrocephalus-treatment/

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8 responses

30 08 2011
lindseypresnell

Thank you for writing this. Sufferers of Hydrocephalus struggle to be heard. So many people have no idea what the disease really is and what can be done. So seeing well-written and well informed posts like this is very encouraging.

6 10 2011
noma

I have a baby with hydrocephalus and here in south africa johannesburg we don’t have the hydrocephalus association, maybe you can help me.

25 09 2012
lezel

Hi there, my name is lezel, I also have a baby with Hydrocephalus, he needs a operation ASAP did u find nyone in south africa that could help u?

2 07 2012
Linda Smit

I am a 39 year old female living in Pretoria South Africa, who was diagnosed with hydrocephalus. I received a vp shunt on 7 December 2010. Since the operation my life has really changed for the better. The urinary inconsistansy has improved a lot. I am also experiencing a lot less muscle contractions and where my speech had been greatly impaired previously I find it easier to say what I think without stumbling over my words.My memory has improved and although I am not the person I used to be, I am much better than when the symptoms became so intense. I am greatful for the neurosurgeon who did my operation. Dr. Kruger from Montana hospital saved my life. I would like to hear from you how I can help your group in your efforts to put the spot ligt on the disease. Please write back to me on my email address. Linda Smit

25 09 2012
lezel

I need urhent help my baby needs a shunt he is 2weeks old now and I can only get an operation on the 15 th next month he needs to go earlier tthan this and I don’t have the finance. Please contact me please lezel

4 10 2012
Nthabiseng

Lezel please got to Charlotte Maxhexhe Hospital(Johannesburg General Hospital)that is where I got great help for my boy,doctors and sisters there are just phenomenal,you will certainly get all the help and the information you need to know about hydrocephalus.They got so mad to why did I wait when baby was 3 months old.Please go now and get help for your baby,i so wish someone would have told me too.Best of luck.Nthabiseng

3 09 2013
lorraine

Hi. I also have a baby with hydro. She is now 5months old. She received her shunt 2months back and doing well so far. She’s the happiest girl in the family. She was. Operated at Steve Bhiko in Pretoria. What advise can you give to me on how to take care of her

3 09 2013
lorraine

Hi Thabiseng. I also have a baby with hydro. She is 5months now and received her shunt on June this year. She is doing well so far. I need you to speak tome as I believe you will help me with some advice. She was operated at Steve Bhiko in Pretoria.
She has non-communicating hydro doe to aqueducts Stenosis.

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