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.





South Africa: City of Gold

27 12 2010

The City of Gold at sunset

In one of the African dialects (which I can’t remember, please forgive me!), the city of Johannesburg is literally translated into “city of gold.” This comes from the gold rush which launched the city into the most industrialized city in Africa. The name has stuck and thousands of people from all over Africa – Zimbabwe, Mozambique and others – travel great distances to come to this “city of gold.” However, what they find here isn’t often a city of gold. South Africa has an unemployment rate of over 30% – three times the US rate. Instead of finding the gold they had expected many find the same tin shacks and lack of jobs they had left in their motherland.

Across the street from the guest house we are staying at 12,000 people, who came to Johannesburg to find their city of gold, live in tin shacks. This squatter camp is the basis of Zoe’s work. Today as we drive through the camp everyone – from the town alcoholics to the lively children wave with a welcoming smile saying, “Hello sister Zoe!” It seems that the whole camp knows her name.

Today we visited with three women. The first, who in some ways reminds me of Zemzem, seems to have her hands in just about every money making venture possible – she sells the clothes she buys from Zoe, runs a small crèche for the children in the camp whose parents are sick, sells wigs, and has about five other schemes. The second has come across marital trouble (her husband is abusive and appeared on her doorstep with a second wife) and Zoe has recently helped her build a new shack as she was kicked out of her abusive husband’s. And the third runs a day care for 28 children.

Family and friends at TLC

The last stop was probably my favorite of the day. While Zoe chatted with the woman my mom and I played tag and tickle with the seven children who were at her place at the time. It always amazes me the universality of a good tickle – every child understands it no matter what country they are from! The other universal, “naaa-na-na-naa-na!” always means, “please try to catch me, I am teasing you saying that you can’t catch me but I really want you to please catch me!” It’s so lovely to know that in every country, every child will love this affection! Our game became so ruckus that the children from the neighboring homes came to see what all the commotion was about! Sorry, no pictures of this, for safety reasons we traveled into the camp without any valuables (no money, cell phone, camera, nothing).

The last stop in the camp was to bring a totally blind man to his home. He is cared for by the community of the camp. He was having lunch at one woman’s place and his next door neighbor will cook him dinner. Zoe brought her some food to help care for him – with the money Zoe makes from selling the clothes to the local woman (which they then sell as a means of income) she buys food for the individuals in the camp who aren’t able to care for themselves, it’s really an impressive system she’s developed!

Upon our arrival back at TLC we discovered a large food donation being delivered, all of the older kids were carrying in loads of sugar, salt, juice, etc. This donation will help ensure that the children and the family have a wonderful Christmas. Our afternoon was spent sorting this donation and doing one of my favorite things, taking a small group of kids out for a special treat, ice cream. The five kids we took out we’re just little babies when I was here last. It was so amazing to sit down and have a proper chat with them! Again, sorry no pictures – two white women with five black children outside of Soweto brings enough attention without out a camera but I’ll try to get pictures of the kids tomorrow.

All in all, today was a wonderful day – exactly what I wanted to do with my Holiday Season – help others and make life a little more enjoyable for a few very special people.

Rebecca

P.S. We’ve finished – sorting clothes that is! My mother and I spent the better part of 14 hours over the last three days sorting clothing for the local woman to sell (see previous post with more details by clicking here). It was a tiring feat but well worth it. While we sorted the clothes Zoe was able to help many in the community, including the starving women who come to the gate at TLC begging for food for themselves and their children. She remarked to me that it felt like she was accomplishing two tasks at once – she was able to help others throughout the day knowing that one of her major tasks was still being accomplished. I’m so grateful to help her be able to help more families in the community.





South Africa: Nobody Wants Your Nasty Underwear, Or How I Got One of the Worst Sunburns of My Life

26 12 2010

In order to get my mother to come to South Africa with me I agreed to go on a safari with her for two days. My main goal of being here was to work for TLC and doing what I felt the Holiday Season is really about – helping those less fortunate than yourself. My mother is here to do the same thing but she knows that this is her once in a lifetime chance to do the activities that most associate Africa with. So we spent

Rebecca and her mom at a South Africa gamer preserve

the first two days of her trip here at a Game Park enjoying the beautiful scenery and seeing lions, elephants, zebras and nearly every sort of African animal you can think of. And I’m so glad we did because I think she might be ready to kill me right now if we hadn’t. Today is the first day that we’ve worked at TLC and the days are even more exhausting than I remember!

Instead of working in the nursery, where most of the volunteers spend their time (and where I spent a great deal of my time during previous visits) we spent the day assisting Thea’s daughter, Zoe. Whenever I talk about TLC I generally mention Thea but what I have failed to note is the active participation of her eldest children. Thea’s four eldest children have all taken on their mother’s heart and work at TLC in different capacities.

Pippa, Thea’s second eldest, has taken over much of the management of the house, the office, and ensuring everything is in order.

Rhys keeps the fully functioning farm running – today he was awaiting the arrival of 100 chickens for his newest “green” project (the chickens lay eggs, which TLC will eat, sell and fertilizing the vegetable gardens in a rotation.

And Zoe, her youngest who is working at TLC, is working with the neediest families at the local squatter camps. She helps young woman feed and cloth themselves and their children while providing them with life skills.

At one point Zoe was running a small thrift store from a shipping container on TLC’s farm. Woman would come to the gate and be able to shop the store of new and used clothing that TLC isn’t able to use on in the nursery or at the house. The clothing and other items were offered at a generous discount – 10 rand (about .15 U.S. cents) for a grocery store size shopping bag. However, the store got to be too much with all of the other work she is doing so she closed down the shop. Over the next few months the shipping container began to fill with items – unsorted and unable to be distributed.

Starting to unloed a 40 foot shipping container

This is where my mother and I come in; we spent 9 hours sorting the items into different categories. At TLC nothing goes unused. First, donated items are reviewed by Joanna (Thea’s eldest daughter) and the nursery staff. The items that are needed in the nursery and will withstand the wear and tear of constantly being worn by children are added to the clothes in the nursery. The other items are given to Zoe. She sorts the items into two categories, the first, clothes that can be sold, and the second, clothes that should be given away. The best clothes that don’t make it in the nursery are sold for a small price to the local women who then mark-up the items and sell them individually as a means of income. The stained or ‘not as nice’ items are given away to the locals. These items will end up having various life forms depending on their deficiency – they may worn, repaired and sold, or, sometimes, used as insulation for the cold tin shacks that make up squatter camps.

Rebecca's mom - turns out she's not only a top-notch attorney with the Dept of Labor, she's also one heck of an underwear sorter.

Our day was spent dividing the items in the previously noted shipping container into salable adult, children and baby clothing; unsalable items and other items like household goods, blankets, etc.  This work is certainly not glamorous.  It’s hot, tiring and very humbling.

So rather than go through the details of the day, here are a few things I learned:

  • Be courteous when giving clothes to your local thrift store. While some ingenious person (see below) may have a creative use for it, giving stained, nasty underwear just isn’t nice.
  • Every item you donate has to be separated before it’s re-sold. If you could take the ten minutes to sort items into children’s clothes, adult cloths and other items it will save the person who has to sort the clothes a lot of time.
  • Rubber-banding your shoe or tying the shoe laces together is always appreciated.
  • Shipping containers are very hot. While in Haiti in January I met with an architect who had developed plans to make housing out of used shipping containers. At the time, my question was, “isn’t that going to be hot?” I can now tell you from personal experience, those containers are VERY hot!

    Rebecca: pre-sunburn

  • Generally speaking, I’m a little obsessive about sunscreen. Today I wasn’t. Let’s just say that I’ve been reminded why I’m obsessive about sunscreen.
  • Those who have very little know how to use items best. I was amazed when Zoe told me that people will use the clothing that isn’t usable as insulation for their homes. So smart!

Today is just the first day of this tedious task, tomorrow will likely be more of the same. This humbling experience is why I came to South

Africa for this Holiday Season; I wanted something outside of the normal U.S. Holidays. I didn’t want to run around buying Holiday gifts for my loved ones and forgetting what the Season is really about. I wanted to truly help those in need and remember how lucky I am to live the life I live.

Rebecca





South Africa: Josh, Rene and Addison

21 12 2010

Today I literally saw the face of hope.  As I walked into TLC for the first time in four years I saw a little boy half crawling, half shuffling across the dining room floor.  Instantly I noticed that he had the signs of hydrocephalus – the enlarged, pointed head, the inward eyes.  Instantly I thought of Rene and Addison and my heart broke for them.

TLC, where I was a volunteer years ago, and will be helping out over the next ten days is the best child’s home I’ve been to.  Probably because it is a home, one in which a family (three generations, in fact)  lives along with 30 orphaned children and a host of volunteers from throughout the world to care for them.  If any child with hydrocephalus is going to thrive without the one-on-one attention parents can provide, it’s at TLC.  And that’s just what Josh is doing – thriving.  Skirting around the floor faster than volunteers can catch him.  Laughing at jokes.  And having a three-year-old attitude.

Later in the day I asked Thea about Josh.  She told me that for two years she begged a nearby hospital to let her take him.  For some reason the hospital never relented – they just let him lay there waiting for the shunt that had been placed in his head to stop working and for Josh to die.  But then he found his voice.  He learned a high-pitched, death curtailing scream.  And he didn’t stop.  Within 24-hours the hospital had called Thea to come pick him up – they couldn’t stand the sound of Josh’s scream.  And with that he was free.  For the rest of his life he’ll still need to deal with the effects of his hydrocephalus and he’s suffered from some brain damage due to a second surgery that didn’t go perfect, but, because he learned to scream, he has hope.

I think of Addison who never had hope.  The child care center she was in was ill-equipped to handle her needs.  They chose to ignore the signs of her condition.  And when help finally came, it was of poor quality and too late.  She suffered a slow death.  She had no hope.  Rene, who was lucky enough to receive surgery in time to limit the damage to his brain, is in a facility that doesn’t understand the special care and attention his condition needs.  They are unaware of how to properly care for the shunt that saved his life.  While he’s lived to 12, his hope is depleting and his time is running out.  All this to me just proves how much our lives are determined by the circumstances of the world around us – Addison could have been Rene, Rene could be Josh and Josh could have been Addison.  But somehow Josh is the lucky one – he gets to live and thrive in the closest thing to a family any of these three children have had.

Rest in peace, Addison.  Keep on fighting, Rene.  And keep on thriving, Josh.

Rebecca Harris





I Am A Mother…

30 11 2010

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

“I am a mother.”  It is with these simple yet profound words that Thea Jarvis, founder and president of TLC Ministries in South Africa explains her life’s work.  In 1993, Thea established TLC Ministries amid political turmoil, racial hatred, and a growing orphan crisis in South Africa.  Today in South Africa there are approximately 2,500,000 orphans.  Thea and her family have made it their life’s mission that they help as many of these children as possible.

In its first year TLC Ministries found two orphaned children a home – Thea’s.  Thea explains, “Our first two little boys were called Joshua and Reuel…We found them in Baragwanath Hospital amongst 40 other tiny, abandoned children.  A little Albino boy, Tommy, followed a year later.  He stole and melted our hearts.  Then at two years of age those stolen hearts were melted down even further and poured out into buckets of tears when he tested HIV positive.  That was our initiation, and first taste of the very bitter cross we were going to carry in this ministry.  After Tommy, came a little boy with cleft lip and palate and we called him Brendon.  He had been abandoned in the Johannesburg Hospital.  Soon after Brendon followed Crispin, who was born to a 13-year old street child.  She already had a one year old to cope with.  A second baby was too much for her.  Soon after Brendon and Crispin had joined our family, God put the ministry into full throttle and more and more babies started finding their way to TLC…Since that time we have been growing by leaps and bounds.  I have personally adopted 14 children in addition to my 5 biological children.  My eldest daughter, Joanna, has adopted four children and has one biological son.  My next daughter, Pippa has adopted seven little ones.  Then there are another 10 who have ended up with us for various reasons, have permanently joined our family, although they are not yet adopted.”

Thea and her family realized they alone cannot help the many children in need. So, after Brendon and Crispin joined the family Thea began to work to streamline the adoption process so that children who came into the ministry who could not be reunited with their biological family could be adopted both domestically and internationally.  Meanwhile, Thea and her family moved into a larger house on an expansive farm outside of Johannesburg.  The large house includes living quarters for Thea and all her children as well as a nursery which over 35 children call home until their family is found.  The nursery is staffed by dedicated and committed volunteers.   To date, Thea and the ministry she founded has managed to help place over 750 children into permanent, safe, and loving families.  Thea, her family, and her ministry are true heroes for the children of South Africa.

Please be aware Adoptions from South Africa and TLC Ministries to the U.S. are currently not open.

You can follow Thea on her blog at http://thea-jarvis.blogspot.com/ or to learn more about TLC Ministries go to their website at www.tlc.org.za.  TLC is celebrating the Christmas Season by sharing the story of one child everyday until Christmas, check these stories at http://seasongiving.blogspot.com/ or

Please Note: Rebecca, Joint Council’s Director of Programs and Services will spend from December 15th – December 26th with Thea at TLC.  While there Rebecca will be blogging and video-blogging at http://www.betheanswerforchildren.wordpress.com.

Today the task is simple- give yourself a big pat on the back and check out everything that Joint Council and you have accomplished this month through our I Am The Answer Campaign. You have successfully made it through the 30 day challenge! Congrats!








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