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/





No to corruption. Yes to families.

14 03 2011

by Rebecca Harris, Director of Programs & Services

The following as an excerpt from our newsletter, Mbali’s Message.  Sign up to receive it by clicking here.

Already in 2011 we’ve seen Ethiopia move to reduce intercountry adoptions by 90% and Kazakhstan officially suspend adoptions in anticipation of their ratification of the Hague Convention.  Haiti and Ukraine are on what we’ve termed our “high alert” list – countries that show indications of closing in the next 12-months. This is a scene we’ve seen play out over and over again, in country after country.  And every time a country has chosen to suspend or close intercountry adoptions, children suffer.  It’s a scene that is quite frankly, confusing, unneccessary, and very disturbing.
In allowing this to occur, we’ve failed the biological families who need preservation services, we’ve failed the children who legitimately need intercountry adoption and we’ve failed our global community.  I don’t know about you, but I’m tired of failure.  I’m tired of seeing children, like Addison, become “collateral damage” in the battle against abuse.  Allowing children to die needlessly and alone is simply unacceptable.

Over the last ten years we’ve fought the good fight.  But we’ve lost too many times.  And every time we lose, children lose.  This month we’ll release a report about the systematic elimination of intercountry adoption and the decrease in services to children.  And we’ll ask you to join us in changing the tide.  We’ll ask you to rally your friends and family to stand up and say “No” to corruption and “Yes” to families.  It’s not enough to just stop bad things from happening – we have to make good things happen too!

So, be on the look out over the next month – in your inbox and our website – I hope you’ll join me in standing up and demanding the fulfillment of every child’s right to a safe, permanent and loving family.  Join me in speaking for those who cannot speak for themselves.





The Answer for Kenny and Be The Answer for Emir

17 11 2010

To learn more about Joint Council’s National Adoption Month Advocacy Campaign-Click Here

Brotherly Love

When a family is formed by adoption, there is a greater understanding of what “family” really means.   Adoptive families recognize that our children do not come to us as blank slates, and we understand that the specter of an unknown birth family will be adopted right along with the child coming home.  What we often fail to acknowledge, is the third family …the orphanage family.

Our son Kenny joined our family 3 ½ years ago from an orphanage in Bishkek, Kyrgyzstan.  He was 8 years old and although had the stature of a 5 year old,he had the confidence of a 30 year old. While there, we were able to visit with 2 of his best friends  and as we were leaving the building I will never forget him shouting up to his friends who were leaning out a window to wave good bye, “Tell Emir good bye!”.  I inquired through our interpreter who Emir was, and discovered that Emir was part of a foursome that consisted of the two boys we had just left and Kenny.  All had cleft lip or facial deformities, and they had formed a union of sorts, which created a bond of brotherhood. It was this bond that provided a sense of family in an institutional setting that certainly did nothing to provide that sort of connection. We quickly came to realize, this was Kenny’s first true family.

We later learned that Emir had recently been moved to another orphanage, thus preventing Kenny from saying good bye in person.  On our adoption trip we had the incredible good fortune to cross paths with an Australian couple living in Bishkek whom we met at a church service. They were looking to adopt a child themselves.  We got the wonderful news (months down the road) that after our conversation they met Kenny’s two buddies and indeed proceeded to adopt them.  We continue to remain connected with this family. The joy in Kenny’s voice as he spoke with them (just this past week) on the phone was obvious.  The boys shared about their life experiences in their new families, they spoke about school and activities, and they talked about their missing “brother”, Emir, who unfortunately, was still left behind.

Sadly, Emir has a family waiting for him, a wonderful, lively, perfectly suited family who has waited for years to bring him home.  Political upheaval and constantly changing officials have left Emir in limbo.  This child is growing older by the day, his cleft needs are not being met, and more importantly, his soul remains filled with sorrow.  Not only is Emir being kept from the family who longs to bring him home, but he has had his first “family” seperated from him through adoption…his “brothers” are happily settled in families of their own and are able to remain connected while Emir has no one to tuck him in at night, no one to teach him how to ride a bike, no one to provide the kind of total commitment and love that every child deserves.

Our son Kenny came to us with an open heart, ready to receive love.  He has flourished despite developmental and academic delays.  He is treasured as a member of his family which consists of 4 other brothers and sisters adopted from Kazakhstan.  His cleft needs are being met, but more importantly, his soul needs are being met.  As we think back to the Kenny we first met…the one who at 8 years old had never turned on a light switch before and had never touched a man’s face before and felt a rough, whiskered cheek…we wish these same kind of firsts for Emir.

Family…it is a complex series of ties and connections.  We have come to realize through adoption that our family resides not just under our roof, but in our hearts as well.  One piece of our extended family is still not yet safe.  We will only know true peace when the last of the brothers is united with his forever family.  Until that day comes, we continue to pray that one day another phone call will come, and Emir’s cheery voice greets us on the other end.  We remain ever hopeful that eventually all 4 brothers can know that no one is left behind.

 

Kenny has An Answer and while he flourishes in a family-Emir is still waiting. Be The Answer in style by purchasing one of the many great t-shirts on our “Be The Answer” apparel site.  100% of the profit from these shirts goes to help more children, like Emir to  have a home and family to call their own.  To check out all of Joint Council’s shirts, click here.





Kyrgyzstan – U.S. Dept of State Announcement

29 04 2010

The U.S. Department of State has issued an announcement regarding intercountry adoption in Kyrgyzstan. The text of the announcement follows.

April 28, 2010

Following the recent unrest in Kyrgyzstan, the Department of State (the Department) has expressed its support for the provisional government’s efforts to resolve peacefully Kyrgyzstan’s political problems and renew Kyrgyzstan’s path to democracy, economic prosperity, and respect for human rights.  On April 20, the Department posted a Travel Warning for Kyrgyzstan.  The Kyrgyz government stopped processing all intercountry adoptions in October 2008 due to reports of corruption and fraud in the adoption process.  The Department is working to determine the provisional government’s stance on intercountry adoption, especially the pending cases of American families.

At present, the Kyrgyz government is not processing any adoption cases, including at least 65 adoptions by American families that were in progress when the halt was announced.  Despite the unrest, we understand that the Kyrgyz criminal investigation of alleged corruption in the adoption process is ongoing.  The allegations are serious:  the Kyrgyz press has reported that two local adoption coordinators who worked with U.S. adoption agencies were arrested and released on bail.  The Department urges the provisional government to complete urgently its criminal investigation and resolve the pending cases so that eligible children can be placed in permanent homes.  We remind the Kyrgyz government that many of the children have serious health problems and that American families, despite the children’s medical conditions, distance, and a two-year wait to complete their cases, remain committed to these children.

The Department has repeated this message to Kyrgyz officials in Washington and through U.S. Embassy Bishkek.  In addition, we have raised the visibility of this issue, and addressed questions and concerns expressed by Kyrgyz officials and shared by some Kyrgyz citizens, through outreach programs.  The Department has sponsored the visit of a U.S. adoption expert to Kyrgyzstan and an adoption-themed study tour to the United States for three senior Kyrgyz officials.  Finally, we have encouraged Kyrgyzstan to strengthen safeguards in the adoption process and eventually accede to the Hague Adoption Convention.

On March 19, the Kyrgyz Parliament passed a bill that would amend certain Family Code provisions on adoption.  It was not signed by the president.  If enacted, the government must still approve additional regulations in order for adoptions to resume.  The draft regulations, which the Ministry of  Labor, Employment, and Migration recently posted on its Web site, address the eligibility of children for domestic and intercountry adoption (including relinquishment and abandonment determinations); the eligibility of adoptive parents; and application, court, and post-adoption reporting requirements.  Regardless, the possible effect of the new law and regulations is unclear:  neither expressly addresses the pending cases.  We are working to determine the provisional government’s position on the bill and draft regulations and how these measures would impact the pending adoptions.

The Department will continue to urge the Kyrgyz government to resolve the pending cases and act in the best interests of children involved in the intercountry adoption process.





Kyrgyzstan – The Next Two Days

11 02 2010

The following is a brief update on Joint Council’s Mission to Krygyzstan.

Children are often abandoned on the steps of the hospital

On Wednesday and Thursday, we met with the Ministry of Health, UNICEF, the Director of Child Protection and visited the Bishkek and Tokmak orphanages along with the Tokmak hospital.   We extend our thanks to the Deputy Minister of Health for his approval of our visits to the orphanages and hospital. Read the rest of this entry »





Joint Council Travels to Kyrgyzstan

4 02 2010

As an important element of Joint Council’s Kyrgyzstan Initiative, we will conduct an advocacy mission to Kyrgyzstan February 5 through February 13.  The mission will include meetings with members of the Kyrgyz Parliament and Ministries along with the U.S. Consular Office, Krygyz media and child welfare professionals.

Joint Council will also present letters to the President and Prime Minister from 30 Members of the U.S. Congress and a separate joint letter from Joint Council, the National Council For Adoption and over 60 U.S. adoptive families.  The letters respectfully request the leadership of the President and Prime Minister in resolving pending adoptions and the lifting of the suspension of all adoptions.

Accompanying Joint Council are 3 adoptive parents, each of whom possess a significant and valued skill set.








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