Special Hope for Children with Down Syndrome in Zambia

I often sit and think of how fortunate we are to live in a country where heathcare is free for all, where most people have enough to eat, a right to a decent education and where we have a social safety net if all else fails. When we give to overseas charities, be it at Comic Relief time or otherwise, I always wonder what provision for children with a learning disability is in such harsh environments. I was recently contacted by the Special Hope Network, and the work they do brought this all the more sharply into focus. 

A guest post by Eric Nelson.



Eric Nelson is the father of three children who have Down syndrome, Maggie and Mollie (twins, 20 years old), and Sam (18).  He and his wife, Holly, founded Special Hope Network in 2008, and have been living in Lusaka, Zambia for the past three years in order to serve children with intellectual disabilities and their families.  In Zambia, and in other developing countries, under-five mortality rates for kids with special needs are as high as 80%.  This means that four out of five of them will die before their fifth birthday.  Read more from Eric about how Special Hope Network is working to change this statistic and to change the lives of individual children...


“Where you live shouldn’t decide whether you live 
or whether you die” –Bono

It shouldn’t, but we all know that it does.  After 29 years of caring for children with intellectual disabilities around the world, I would suggest a corollary to the above complaint; “Who you live with shouldn’t decide whether you die or whether you thrive.”   But, it does.  Without hesitation, I would argue that the factor which most determines the health and well-being of a child with disabilities is not the educational opportunities, not the access to medical care, not the therapies available, but the love and commitment of his/her family or caregivers.

We first met Francis in May 2010, just a few months after relocating to Lusaka to establish Special Hope Network in Zambia. He was a nine month old, stunningly adorable little boy with Down syndrome, round, chubby and learning to sit on his own.  Unfortunately, what was also evident from the beginning was his mother’s lack of enthusiasm about her boy. 


So when she called us to tell us that Francis was having 24 seizures per day, and could we help, she was deeply disappointed that we didn’t respond by giving her money. Instead, we rushed them to the hospital (don’t think hospital like you might find in the UK).  After we had spent the day with her, administering several tests and simple observations, it became clear that if Francis had any seizure activity, it wasn’t that day.  We left them there to be observed overnight, and when we went to check on them the next morning, we found she had discharged herself, moved from the compound where she was staying, and we heard from her no more.

Approximately six months later, a volunteer at a clinic called us to say that she had seen Francis and he looked very ill.  It took us several days to track Francis and his mother down, and when we found him, ill was a complete understatement.  We immediately brought him and his mother to a private pediatrician and found that our plump little boy now weighed only five kilograms.  Gone were the bright eyes and almost any other sign of growth or development. 

So what had happened?  I remember sitting in the doctor’s office having our social worker translate for me what the mother was telling our doctor.  She said that she was now pregnant, and consistent with tradition here in Zambia, she had stopped breastfeeding Francis altogether. 

The cultural reasoning behind this is that if you breastfeed your current child, you are taking food away from the developing baby in your womb, and when it came to which child she valued more, it was quite clear.  Francis was a sign of dishonor to her, some terrible curse or failure on her or her husband. However, this new child in her womb could change things around for the future of her family.  And if Francis died, well, the shame would be removed.  This is most likely the reason why Francis was not receiving consistent food from his mother once she stopped breastfeeding. 

We offered to his mother to take Francis for a period of time to try to feed him back to health, like we had our adoptive son, Samuel, fifteen years prior.  Sam, who also has Down syndrome, came to us from Brazil weighing just 4.2 kilograms at 13 months-old.  Now at 18 years-old, Sam is a healthy, charming young man who is a key part of our work at Special Hope.  Francis’ mother agreed, so on that Friday afternoon we brought Francis home, but it was not until we got home and unwrapped him from his bundle of clothes that we realized how late we were… His body was skeletal, with his skin hung off him like an outfit five times too large.

We had Francis a total of two and a half days.  Sunday night at four A.M. I awoke to his labored breathing, as I lay on the floor next to his cot.  I scooped him up, jumped in our truck and sped off to the nearest private hospital (still don’t think hospital).  There I held him for 20 minutes as they tried and failed to put an IV line in his tiny, dehydrated little arm.  And there I held him as he died.



Everything changed when Francis died.  Because of Francis, we completely altered the model by which we were functioning. We realized we could not simply be educational consultants, but if we were going to have a chance to love children with intellectual disabilities like Francis, we had to figure out how to keep them alive.  We opened our first Community Care Center approximately one year after Francis’ death.  In these Centers, we not only provide excellent educational interventions, but also Physical, Occupational and Speech Therapies. Perhaps even more significantly, our model is built around the parent and caregiver team: parents or caregivers must attend sessions and be fully engaged members of the learning and therapies at our Center.  Francis taught us if we don’t reach the mommies, we don’t reach the kids.

We met Isaac at our Community Care Center in May 2011, a year after meeting Francis.  He was a small, handsome boy with Down syndrome and despite beginning to grow and learn he was in a dangerous cycle of sickness.  Every time he would gain half a kilogram, he would get a fever and diarrhea and lose three-quarters of a kilogram.  It was clear to everyone he was spiraling down.  Thankfully, it was clear to his mother, too.  Though Isaac was the last of six children, she was always one of the most constant and engaged parents at our Center, working on Isaac’s signs and physical therapy.  



One Sunday, his mom called my wife’s phone and in broken English, begged her to come see Isaac that very day.  Isaac once again had fever and diarrhea for a week and she was deeply concerned that he was dying.  Isaac’s mom felt she was failing him and couldn’t keep him healthy or grow him. She desperately wanted her son to thrive, and she begged us to help her boy to live. Through months and months of constant intervention and nutrition (think every hour feedings and drinks and vitamins) Isaac turned the corner.  Now, one year later, Isaac weighs almost double, has not had a fever or diarrhea in over six months.  Isaac lived because his mother was able to break through the fear and the stigma in this culture and do the rare thing- plead for help.  Isaac lived because Isaac’s mother was a part of something rare in Zambia.  Through our Community Care Centers, there were other mommies with children just like hers, and they encouraged her all along the way.



We can’t change where children with intellectual disabilities are born, but we can encourage their parents to care for and to love their children and to give them hope.  Unfortunately, according to UNICEF, for every one Francis and one Isaac, there are 139 children under the age of five in Lusaka that we haven’t reached.  We ask you to partner with us to bring for each of these children a home, health and education.  And many times… life.

Eric Nelson
President, Special Hope Network 


Visit our website here: http://www.specialhopenetwork.com
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You can also check out the work of UK based Down Syndrome International (DSi) who travel worldwide to educate and make a difference to children with Trisomy 21.



2 comments:

  1. What a very affecting and illuminating post. It's important that we look at what's really happening (ie parents not caring for children because of shame or stigma) rather than optimistically hoping that all parents will work tirelessly to help their children thrive, when that's clearly not the case. Thank you so much for sharing this.

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    1. I too was struck by that message Jen. Education, advice and support are so much more difficult to deliver when society is so unaccepting of any form of disability. I found this post quite a difficult read to be honest.

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