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/





CCAI Foster Youth Congressional Briefing

2 08 2011

As a summer intern with Joint Council, I’ve had great opportunities to meet inspiring people, learn tons about international child welfare, and participate in the meaningful work Joint Council does. As my internship rapidly approaches its conclusion, I can say attending the Congressional Coalition on Adoption Institute (CCAI) Foster Youth Intern Briefing last week has been one of the highlights of my summer.

At the Briefing, CCAI’s Foster Youth Interns, fifteen young adults who have personally been in the US foster system, presented the policy recommendations they developed this summer for US foster care. Well-researched and well-formulated as they were, the personal experiences the interns interwove was what gave the recommendations the most weight.

I don’t think I’ll ever forget when one of the interns told the spellbound audience that he had just been adopted at the age of 25. Whether born in Baltimore or Beijing – whether 2, 12, or 22 years old – every child needs the opportunity to have a permanent home so they can experience the love only family can provide.

Sarah Neville
Community Outreach Intern





Sarah – An Intern’s Perspective

1 07 2011

Applying to be an intern at Joint Council was probably one of the best decisions I made this past year. After spending only two weeks in the office, I had already learned more about international adoption than I’d ever hoped to! This week, we were given the opportunity to visit Children’s Home Society & Family Services, an adoption agency with decades of international experience, to receive additional training on international adoption.

Since I have two adopted siblings from China, I’d watched my parents go through the “paper chase” of home studies, fingerprinting, dossiers and travel approvals without really understanding what was going on—then at CHSFS, I finally came to understand the “big picture” of the adoption process. More importantly (to me), I also learned more about the current issues in international adoption, and although I’ve always been mainly interested in China, the training has inspired me to involve myself more in adoption issues in other countries, including Ethiopia and South Korea.

The more I learn about international adoption, the more appreciative I am that Joint Council is here working to advocate for every child’s right to a family. I’m looking forward to learning even more over the course of this summer!

Sarah Neville
Community Outreach Intern





Rachel – A Joint Council intern on her last day

6 08 2010

Rachel Heend is currently a sophomore at the College of William and Mary. She intends to double major in Psychology and Hispanic Studies. Rachel spent her summer interning at Joint Council.

Walk in, say the “Good Mornings!” to Tom and Rebecca, chat with my fellow interns, sit at my desk and start my day. This is the routine that I have grown accustomed to since June 1st. It’s weird to think that a little more than 2 months ago I was just starting at Joint Council. I remember it like it was yesterday. I was nervous, excited, eager, and somewhat intimidated by Tom, although I tried my best not to show it. Now it is my last day at Joint Council, and I can for sure say that I no longer feel nervous or intimidated. My experience at Joint Council has surpassed my expectations. Tom, Rebecca, and all the interns have provided me with such an open, comfortable, educational and fun environment, making me always feel excited and able to NOT dread coming to work. I couldn’t ask for anything more after hearing my friends’ horror stories from their internships.

Coming into this internship as the youngest, I thought that connecting with my fellow co-workers, and gaining respect for my work and from my peers was going to be difficult. From the first day, all my preconceived notions and worries were wiped away. Like I mentioned before, the atmosphere at Joint Council is absolutely incredible. There is a sense of team-work and a unique collaboration effort between everyone that has created a positive environment and successful organization. Observing Tom and Rebecca, and collaborating with the interns has taught me so much and has opened my eyes to a whole new career path. Although I am sad to leave Joint Council, I am also very excited to start my second year of college with this great experience under my belt.

It is now nearing the end of the work day. Instead of finishing up file organization, cleaning up my desk for the day to only get it messy again tomorrow, and saying the “see you tomorrow’s!” to everyone, I am now completing the file organization (thank goodness!), clearing out my desk, and saying my final “good-bye’s!” to everyone in the office.  This has been a wonderful summer internship, and I want to spend my last few words thanking Tom, Rebecca, Jamie, Michelle, Karissa, and Megan for making that possible. Finally, I want to pass on some useful advice to the new interns: there is no shame in bringing delicious baked goods into the office. From my own experience at Joint Council, some home-made or even store-bought cupcakes are always a crowd pleaser and have been proven to increase work efficiency. ; ] Good luck!








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