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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CCCWA requests photos & videos of children adopted from China

2 08 2011

We hope you will be able to participate in a commemorative book which will soon be published by the China Center for Child Welfare and Adoption. This is a unique opportunity to honor the CCCWA’s service to children and to celebrate your own adoption.

This year marks the 15th year of service by the China Center for Child Welfare and Adoption (CCCWA). Beginning in 1996, the CCCWA has enabled tens of thousands of Chinese children to find safe, permanent and loving families through intercountry adoption. The work of the CCCWA is a model for the world, utilized the principals of the Hague Convention long before most other countries and conducted all of their efforts in the best interest of children. Under the direction of Director General Zhang Shifeng, in 2006, the CCCWA expanded their vision and programs to serve children not only through intercountry adoption but also through foster-care, domestic adoption, family preservation, and orphan care. Their work has and continues to ensure that a child’s right to a family is not just a concept but a reality.

In honor of this milestone, the China Center for Child Welfare and Adoption’s (CCCWA) 15th Year Anniversary, the CCCWA will be publishing a book commemorating the CCCWA’s dedicated efforts to find families for the children of China. As part of the commemoration, Director General Zhang Shifeng is requesting that adoptive families send pictures and brief stories of their adoption to the CCCWA.

Please consider participating in this unique opportunity by submitting your pictures and stories to the CCCWA or your adoption service provider. The deadline for submissions is August 22, 2011. Pictures can be mailed or scanned and emailed to the CCCWA (see below) or your adoption service provider. If you are sending pictures and stories directly to the CCCWA, please include this release. If you are sending them to your adoption service provider, please contact them for their particular release form.

China Center for Child Welfare and Adoption
Sun Light International Plaza No.16,
Wang Jia Yuan Lane,
Dong Cheng District, Beijing 100027
ccaa@ccaa.cn

All of us at Joint Council thank you for providing a loving home to a child in need. We hope you will choose to celebrate your adoption by participating in the commemoration of the CCCWA’s 15th year of service.

Best wishes,

Tom

 

Letters from the CCCWA (.pdf):

CCCWA Letter to Parents and Adoptees

CCCWA Information and Photo Release





300 Lives

14 07 2011

Seven of us walked into an orphanage in rural China, a brightly lit, clean and active place which serves as home for 300 kids. It was, like so many buildings in China, only a few years old. We walked into a building with new cribs (17 to a room), a well-equipped tactile stimulation room and a clean cafeteria with seating for over 200. But what we really walked into was not simply a building. We walked into 300 lives. 300 little lives filled with activities and therapies but void of a mother’s love. Void of their father’s kiss good night. And void of the hope that someday someone would give them a new life, a new reality…a new family.

The orphanage director was rightly proud of the facility, but also clear about the needs that remain – and grow every day. With the birth defect rate jumping over 40% in the past three years, it’s a challenge just to keep up, let alone expand.

And that is why we are here. To help. To partner. To preserve families and create new ones. To connect and to learn. To give a child with a cleft pallet a specially designed bottle that provides life giving nourishment. To share our collective passion. And privately shed our tears To share what we know, give what we can and marshal the resources to fill in the gaps. To give a moment’s love to a child who won’t make it to age 5. To build a sustainable garden and advocate for more. To walk into 300 little lives…and never leave.

By the ninth day of our journey in China, Christina and I will have assessed dozens of children, evaluated eight orphanages housing over 1,200 children and strategized with 22 government officials at central, provincial and city levels. But much like entering the orphanage, what we really did was enter many lives and allowed them to enter ours.





Visiting Orphanages in China

13 07 2011

Today showed the juxtaposition of what is possible with the orphan situation in China.

In the morning our visiting delegation made up of Joint Council, along with NGO, corporate and government partners took breakfast at the hotel before embarking to visit two orphanage sites in Henan province. Henan province is considered by many to be the heart of China – where most of the great civilizations and historical rulers emerged from in times past. A group of American parents (and grandparents) were there relishing the moment of having just adopted – most with cameras out taking photographs of baby’s “first breakfast,” in a few cases with beaming older adopted Chinese siblings looking on, a picture of happiness and joy. The babies appeared to be well adjusted, sitting in their highchairs with smiles for all and clamoring for more cheerios. These kids were clearly ready to embark on a new life with permanent families to care for them.

We then proceeded to visit our first orphanage of the trip. A large complex with an outdoor courtyard, it was built and converted in 2008 to care for children without parental care. Bursting to the seams, it nonetheless was attempting to create a rich environment for the kids that included age-appropriate activities for both fine and gross motor skill development. This included some Montessori materials, arts and crafts, a bubbly therapy tub, sand play and music. For the small two percent of the population that was developing at a normal rate, there was a library and several children were diligently working on their lessons. Yet many of the babies were lying on mats, despite the bustling activity going on in the rest of the building with the older children. On this particular day too they had a number of volunteers – many of whom were a contingency from Joint Council member Half the Sky’s volunteer program, visible by their branded t-shirts. While it is clear that staffing is an issue, when queried, the administration identified the need for specialists – especially therapists, social workers and counselors for their older children. They clearly have a vision to help these children thrive (we watched one boy proudly show us some steps he could not take even 6 months ago) and move on when possible.

The second visit is harder to write about. While, due to the use of foster care, there is a much smaller number of children in the institution (those with less severe disabilities are sent to live with empty nester couples who are paid by the state), the caregiver to child ratio was higher than what we had seen earlier. In several rooms the television served as the babysitter, although the children were not attentive to it. Many children had special needs yet the range of therapy rooms and equipment witnessed previously did not exist. When asked about their needs, it was clear infant kitchens and bathrooms and a space for drying cloth diapers were priorities. The facility also was part of the older state model of care, hosting children and elderly in the same compound. The facility has one shared kitchen preparing meals for all – the children and the elderly. The elderly were sitting in groups in the heat outside looking despondent and morose and, honestly, the parallel between the young and old, behind these walls, is what touched my heart the most.

The abandonment of the majority of these children was most likely due to their being born with medical needs their birth families could not care for. Clearly though the children we saw have been lucky to be found only to be brought to a minimum level of comfort and care. China is experimenting with its first official “safe haven,” endorsed by the Governor of Hebei. It is hoped that a baby, healthy or not, if must be relinquished for whatever reason, will be dropped in a safe and secure place to be evaluated and placed. Clearly this pilot is controversial but the government’s acknowledgment of the abandonment problem is commendable in its forward-thinking. The orphanages expressed a desire to travel abroad and see how care is provided elsewhere – to learn from the outside. This willingness to learn by observation and enhance training is a sign of better practices for both those children who will remain in custodial care and those waiting to join a family of their own, through fostering or adoption.





China Opens Adoption to Single Women

15 03 2011

The China Center of Adoption Affairs (CCAA) has announced that single women may once again adopt in China beginning today, March 15, 2011.

Single adoptions, which once comprised over a quarter of all intercountry adoptions in China, will now be used to find families for Chinese children with special needs.  The new singles program is specific to finding families for children designated as Special Focus.  This designation usually indicates the child has a special need, is pre-school  or school age and has been on the shared waiting list for more than 60-days.  It can also indicate a non-special needs child of school age who has been on the shared waiting list for more than 60-days.

If you or someone you know, are considering an adoption in China, please contact a Joint Council affiliated Adoption Service Provider to learn more about this new program.

Following is the full text of the CCAA announcement.

____________________________________________

Government departments and adoption agencies in receiving countries, In order to promote special needs child adoption and guarantee the basic interests of the orphaned and disabled children, CCAA decides to accept the adoption applications from female single applicants to adopt according to the requirements listed in this notice, starting from March 15, 2011:

  • Female single applicants are allowed to adopt special focus children listed on the special Needs System of CCAA.
  • One applicant can only adopt one special focus child at a time, with an interval of at least one year between two adoptions.
  • The applicant shall have reached the age of 30 years and are under 50. For applicants over 50, the age difference between the child to be adopted and the applicant shall be no more than 45 years.
  • The applicant shall provide her civil status certificate. Unmarried applicants shall provide certification for being single and non-homosexual; divorced applicants shall provide the divorce certificate of the last marriage; and widowed applicants shall provide the death certificate of their ex-spouse.
  • The reason of being single and attitude towards marriage. Applicants shall have clear indication of willingness to appoint male figures as role models for the adopted child, and welcome male friends to join family gatherings.
  • Applicants shall have received inter-country adoption training and training specifically for special needs child adoption so as to understand fully the physical and psychological needs of special needs children.
  • Detailed nurturing and rehabilitation plan. Applicants shall be qualified personally and socially for caring special needs children and have wide social and family supporting network which can provide assistance any time.
  • Guardians appointed by the applicants shall provide written statement as consent to act as the guardian of the adopted child. X. If the applicant has a stable relationship and lives with a male partner, t he requirements of couple applicants shall be applied.
  • Applicants shall be healthy both physically and mentally according to the requirements by CCAA for prospective adoptive couples.
  • Applicants shall be law abiding with no criminal records, and have good moral quality and conduct
  • The family annual income shall reach $10,000 per family member, including the prospective adoptee and the family net assets value should reach $100,000.
  • The applicant shall have good medical insurance which can cover the medical expense of the adopted child.
  • Applicants shall be experienced in child caring or be occupied in child-related fields, such as doctor, nurse, teacher, child psychological counselor, etc. It’s best that the applicants have already had successful experience in caring for special needs children.
  • The number of children in the applicant’s family under the age of 18 years shall be no more than two, and the youngest one should have reached the age of 6 years old.
  • Applicants shall be fully prepared for adopting a special focus child.
  • Social workers shall provide the following information fully and timely in the home study reports besides family visit interviews: Adoption motive. The decision to adopt a special focus child shall be well-considered. Applicants shall be capable of caring for a special need child and be responsible for the well-being of the child.







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