First National Clubfoot Symposium of Niger

July 2nd was an exciting day for CURE Niger – the CURE Clubfoot program hosted the first ever National Symposium on Clubfoot in the country. It was held at the national stadium, and it was a great success. There were over 100 participants, and the event was well covered by the local media. The Symposium was officially opened by a representative of Niger’s First Lady (who is also a physician and surgeon), and overall many other doctors and others who work in the health sector were present. It was an opportunity for Brian Van Hall, our Executive Director to share a bit about the Clubfoot program, but also about the CURE hospital and CURE in general. Everyone present was invited to come and visit the hospital.

The Symposium was timed to coincide with the visit of Dr. Theuri, who is the Medical Director of the CURE hospital in Kijabe, Kenya. Dr. Theuri was one of 3 surgeons who came to Niger this summer, to help cover for Dr. Negrini while he was away on vacation, and we thought it made sense to have our symposium on clubfoot during his stay, since he has played such a big role in the Clubfoot program in Kenya.

We also had Professor Sunna, a Nigerien Orthopedist at the National Hospital (Lamordé) here in Niamey. He gave a lecture on clubfoot and the Ponseti Method, and it was great to have his participation as well. One of the 10 clubfoot clinics in the program is at Lamordé, and they do a great job. All of the 10 clinics were represented at the Symposium, and we were able to hear from the team from the clinic in Maradi, who has also been very successful at recruiting patients. They were able to share some of the lessons they have learned along the way. We also heard from Pastor Hassane, who serves as the Counselling Coordinator for the program, and who spoke about the importance of the counsellors, who serve as patient advocates and are able to advise the parents of the children and walk with them throughout the course of their treatment.

Moutari Malam-Saddi, our national Clubfoot Coordinator did a great job organizing the Symposium, and helped moderate a lively discussion on the sustainability of the program and the future direction it needs to take. All were in agreement that the different actors in the health sector, and especially the Ministry of Public Health, need to be more involved in the program if we are to truly reach our goal of providing treatment for clubfoot to every child born with the disability. Some suggestions were to begin including the Ponseti Method in the curriculum for all medical students and nurses, and to continue to train health care professionals on clubfoot treatment. Overall it was very encouraging to see so many of Niger’s health care workers so involved in the discussion and dedicated to reaching the maximum number of patients through healing.

We also got to see a demonstration of the effectiveness of the treatment, as a football match and race was held with some former patients of the program. It was amazing to see them run, and exciting for them to have a chance to run on the grass at the national stadium. Who knows, maybe some of them will grow up to play for Niger’s national team!

Here is a short news clip covering the Symposium, as well as some pictures (courtesy of Fanny Franceschi).

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Dr. Mele Djalo, the representative of Niger’s First Lady, Dr. Malika Issoufou, Moutari Malam-Saddi CURE’s Clubfoot Coordinator, and Dr. Theuri.

Brian Van Hall and Josh Korn

Brian Van Hall and Josh Korn

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Dr. Theuri giving his lecture.

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Pastor Hassane presenting at the Symposium.

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These kids are all former patients of the Clubfoot program, and they were able to run and play on the field at the National Stadium.

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All the kids got Clubfoot t-shirts.

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The competitors!

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Her first painted cast.

Uma was a hard shell to crack. She has been at the hospital for a while now and she is the only patient who has ever refused to have her cast painted. She would see kid after kid with their painted cast and I would try to entice her with different ideas of how I could decorate her cast, but she was not having it. I’m not going to lie, this kind of hurt my ego. I couldn’t understand why she wouldn’t want to add some color to her white cast. I was determined to get down to the bottom of her aversion to a decorated cast.

She would come to art therapy and she would draw or paint, but she was mostly very serious while doing it. The truth is, I wasn’t so concerned by the fact that she didn’t want her cast painted as by the fact that she seemed to have erected a barrier to protect herself from the outside world. The fact that she seemed to be so guarded. I wanted to be able to get through to her. Today, I sat with her and started drawing different pictures on a piece of paper that I thought might catch her interest. After quite a few pictures, she cracked a little smile. Much to my amazement, she said she changed her mind and that I could paint a unicorn on her cast! Of course, unicorns are pretty awesome, but I don’t think that it was the whimsical nature of the unicorn that caught her attention. I think it was the steady persistence that eventually caused her to let me in.

One of the things that often blows people away when they visit Niger and the hospital, is how open the kids here are. How they are so quick to get excited when someone comes to visit, and how quickly they latch on to visitors who show them even the tiniest bit of kindness and love. I think this is definitely true. The kids here are so ready to give love and to receive love. Sometimes it seems like they are just waiting for an excuse or opening to come and give you a big hug. But there are also other kids that act differently. They are not as carefree. They might come off as angry or sad and they might push you away altogether. These are not the kids that stick out in a crowd of happy, bubbly kids. These are the kids that avoid the crowd, the kids that, for whatever reason, need more time and patience, and a little extra love and care. Sometimes they’re just waiting to see if you to will make the extra effort to come and find them. To look beyond the crowd and seek them out. Sometimes it is discouraging when you make an extra effort, and it feels like a hopeless cause when your efforts fail time and time again. But it is worth the effort. These kids are worth the effort, and they are worth pursuing. Every kid, whether they show it or not, wants to be loved and cared for. And often, the ones who act like they want it the least, want it more than anyone else.

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It was always only a matter of time before a unicorn ended up on a cast.

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A surprise party at CURE

If you know Brian Van Hall, our Executive Director, you know that he LOVES surprises and LOVES being the center of attention. Just kidding. In fact, the opposite is true, but we wanted to celebrate his birthday in a very public way, and acknowledge him anyway. The kids at the hospital got really excited last week when I told them about the plan to make birthday signs as a surprise for Brian. While we were working on the signs, one of the kids asked me, “Are we doing this for the director because he’s so nice?” I love that question.

I told her that’s exactly why we’re doing it. That innocent little question from one of the kids says a lot. Here in Niger, culturally it makes all the sense in the world to do something to honor the “Director” (with a capital D), no matter who he is, because he is the boss. But this child was able to see that what we were doing was different. We were not doing something for “the Director,” we were doing something for Brian. He is an amazingly skilled hospital administrator and leader, but he’s also so caring, nurturing, sensitive, and humble.

On Friday morning, before devotions, the kids (and many of the mothers) all gathered together with the signs that they made, and put on their party hats. They all marched over to the chapel, singing “Happy Birthday” in French, and burst into the chapel to surprise everyone. They were so excited about this party, and even though some paper party hats and a cake are not that big of a deal, for them, this was an event. They sat so patiently and still through the entire meeting and not one of them took off their party hats. They wore them for hours even after the party.

Once the meeting was done, we cut the cake and passed it out. Each kid got their piece of cake and maybe only 2 out of the entire group actually started eating it. The rest of them just sat in their chairs staring at the cake as though they had never seen cake before in their lives. Some of them probably hadn’t. They carefully wrapped up their cake in their napkin and said they were saving it for later. I don’t think you would find that anywhere else in the world – kids sitting there, cake in hand, and not eating it! I honestly think they were just so overwhelmed and excited by the whole event that they weren’t really ready or able to eat. They were so excited by the celebration that they didn’t have time to think about cake.

I strongly believe that kids are the best judge of character. They know when they’re truly loved accepted. Brian’s revolving office door is proof that these kids feel extremely loved and accepted by him. They are constantly hanging out in his office at all times of the day. He has been nothing but loving and that is why they were so excited to celebrate him on his birthday.

Plus, you know…cake.

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Getting ready to head to the chapel

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I knew my giraffe party hats (from Leon’s last bday) would come in handy one day!

Brian loves all the extra attention ;)

Brian loving all the extra attention ;)

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Fear and Faith

When the recent outbreak of the Ebola virus burst into public view and public discourse, millions of dollars were invested in West Africa to treat the virus and prevent it from spreading. Of course the spread of the virus had already been wreaking havoc and destruction in West Africa for months before anyone in Europe or the US knew anything about it, but then people from outside West Africa were infected, and it became the biggest story of the news cycle. It was evident that fear played a large role in keeping Ebola in the news cycle and in shaping the public discourse around it.

Even in Niger, where no known cases of Ebola were discovered, huge investments were made to prevent the spread of the virus and to help educate the population about it. There were spots on the radio, huge billboards and a concerted effort made by the Ministry of Public Health to involve all the actors in the health sector in the campaign against the virus. This was all good and important, and probably did help prevent the spread of Ebola in Niger.

A billboard close to our house.

A billboard close to our house.

But recently, another epidemic has ravaged the population of Niger, and barely anyone outside of the country has heard anything about it. A Meningitis outbreak has caused hundreds of deaths in Niger, many of them occurring in Niamey, the capital. Fear has gripped the population, as a shortage of vaccines has put peace of mind out of reach for most, and because of the shortage, price-gouging has kept it out of reach for all but the wealthiest. The authorities even closed the schools for a week to try and slow the spread of the sickness.

It seems as though the situation has improved recently, however over the past few weeks, the sound of ambulances have been heard day and night, bringing more cases to the treatment/quarantine center, which is located just around the corner from the CURE hospital. This outbreak has been going on since January, and although it has received some coverage, for the most part it has barely registered as a blip on the radar of most major news outlets.

This is the Meningitus treatment center, around the corner from the CURE hospital.

This is the Meningitus treatment center, around the corner from the CURE hospital.

Here are the tents.

Here are the tents of the treatment center.

So for anyone keeping score, here is the breakdown:

Ebola in Niger – 0 cases and 0 deaths.

Meningitis in Niger – more than 6,000 cases and more than 400 deaths.

Even though the pace of the spread of the Meningitis seems to have slowed, it is still a threat. Everyone you talk to here in Niger is convinced that once the first rains fall, the Meningitis will be washed away. They could be right for all I know, and unfortunately, the people of Niger have plenty of experience with this kind of thing – Niger is right in the middle of the “Meningitis belt”). I don’t know about the science of this theory, but it does serve as a potent symbol for hope and healing, especially since we are suffering through the hot season, when rain is close at hand, but still so far away.

This imagery is common in the Bible as well. A dry land represents a land of death, where there is no growth or life, only heat and dust.

“You, God, are my God,
earnestly I seek you;
I thirst for you,
my whole being longs for you,
in a dry and parched land
where there is no water.”
(Ps. 63:1 NIV)

To thirst for water is to thirst for life, and rain brings that life. In Niger people understand this very well. Even when not faced with an epidemic, they know that death is never very far away. They wait for the rain, and pray for the rain to fall abundantly, because when it does they know they can expect a bountiful harvest, and that is the difference between life and death. A good rainy season means death has been put off and pushed away, at least for a while. At least for a season, the danger has past. They know that they depend on the rain, and ultimately on God, who sends the rain. They depend on God and they wait on God because they have faith in God.

“On my bed I remember you;
I think of you through the watches of the night.
Because you are my help,
I sing in the shadow of your wings.
I cling to you;
your right hand upholds me.”
(Ps. 63:6-8 NIV)

This dependence is totally foreign to people in the western world. For most of us, if we think about rain at all, we see it as something annoying. It is something that keeps us inside and prevents us from doing what we have planned. We don’t see rain as a blessing, and we certainly don’t pray for it. The idea that our survival is dependent on rain (or God, or anything) is so outdated that it borders on the absurd. It is childish. The current zeitgeist of our culture is one of self-sufficiency. We have built a whole civilization on the principle that we can figure out any problems that come our way because we are so clever. Ignorance and superstition are the only things holding us back. The destiny of the human race is progress, and technology is our salvation.

But this confidence crumples when it is confronted with real setbacks and hardship. Solidarity often dissolves into selfishness in the face of danger and people are seized with fear. This was clear in the reaction to the Ebola outbreak in the United States. People were actually upset with healthcare workers who dared to go to the center of the epidemic in order to treat the victims. They were labelled irresponsible since they risked exposure to the virus, and risked bringing Ebola from “over there” to “here.” The foolishness (to say nothing of the small-minded cruelty) of this type of thinking is so evident in our day and age of globalization, communication and intercontinental interconnectivity that it could only be the result of fear. An irrational fear that somehow tries to draw a line between “here” and “there” when no such line exists. It is the same fear that tries to draw a line between “us” and “them.”

“Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. And he has given us this command: Anyone who loves God must also love their brother and sister.” (1 John 4:20-21 NIV)

When we live by our own strength, we are filled with fear when we see that strength failing. We scramble for safety, and if we have to step on a few people to get there, so be it. But faith is like love, it casts out all fear, because it does not depend on a strength that is temporal and will fail. It is dependent on a God who is all-powerful. A God who is able to hide us in the shadow of his wings. Through faith we are happy to admit that we are not self-sufficient. We are able to say, like a child, “I cling to you,” but also, “I cling to my brothers and sisters because through them I see you.”

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Animal Casts

Last week, an unintentional  theme started to develop on the casts in the art therapy room at the hospital. All the children had animal casts, and it all started with Abdoulaye. He asked for a giraffe on his cast. Once we did a giraffe, he realized (actually, we both realized) that the possibilities were endless – we could do all kinds of animals.

Something that is great about animals, especially when working with these kids, is that they are universal. Even if you don’t speak the same language, you can act out the animal you are talking about, and make the sounds that the animal makes. This is easy with a dog or a cat, but more difficult with other animals. What sound does a lizard make for example? And even with animals that have very familiar or recognizable sounds like dogs or cats, you have to do some guess work, since different countries and cultures have different sounds for different animals. In America, dogs go “Woof woof,” whereas in Israel, dogs go “Hav hav.”

Once Abdoulaye had his giraffe on his cast the other kids started getting into the idea. Soon they were all coming up with ideas for animals on their casts, and acting out the animal sounds. I’ve written before about how painting on a child’s cast is a great way to bring positive attention to the healing process. I think that having a theme week like we did last week is also a great way to unite the kids and bring emphasis to the fact that they aren’t alone. These kids feel singled out and cursed – a lie that society wants them to believe. But when they’re surrounded by others who are going through the same thing, they no longer feel alone. In fact, they feel special. Who else gets to walk around with awesome animals casts?

These kids have all been through same pain and ridicule, but they’re also going through the same life-changing process of healing and it gives them strength.

As the kids kept coming for art therapy sessions and then returning to the patient guesthouse, they would huddle together and point at each others casts, giggling and talking about the different animals they each had. It was another way to bond and join together in the healing process. Another way to recognize the beauty within themselves, but also the beauty within their peers.

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giraffe

lizard

lizard

puppy

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puppy

cat

cat

cat

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camel in the works

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Thankfully I had owl tape since I couldn’t paint an animal on the gauze bandage

 

 

 

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Painted legs

Hamsatou was born with clubfoot on both of her feet. She spent several months with us at the hospital while she was being treated. We all missed her so much when she left. She has such a great (and serious) personality. We always counted it a victory if we managed to get her to laugh or smile. It’s not because she’s an unhappy child, she’s just extremely laid back and confident as well.

She recently came back to the hospital for a check-up. Everyone was so excited to see her again and squeeze her cute cheeks. When she came to art therapy, she was very clear in what she wanted. She asked to get her legs painted. I was confused because we’d painted her casts many times before, but now she didn’t have casts because she was done with her treatment and her legs were perfectly straight. She looked at me like I was obviously not catching on. Of course she knew she no longer had casts. She wanted her actual legs painted. So, that’s what we did!

She sat so still and didn’t budge as she got each leg painted. Once we were done, she broke out in a huge (unprovoked) smile. We were overjoyed. She was excited to go back to her mother at the patient guesthouse to show her. It’s as though she had been planning to get her legs painted ever since she knew she would be coming back to the hospital. As though to have closure with this experience. I thought about it and I really like the idea of painting on the actual skin once the treatment is finished. It’s a way of emphasizing the beautiful legs that have just been healed and it’s a way of saying, you are beautiful and we want to celebrate that beauty and bring as much positive attention and celebration around your healing.

Sometimes the kids are a step ahead of me when it comes to truly knowing how to comemmorate the beauty in their lives. I learn from them every day.

 

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With casts on her legs (and fabric tied around her feet to protect them when she crawled).

 

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Those chubby little legs!

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Being her sassy self ;)

 

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Happy to have her legs painted.

 

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St. Patrick’s Day in Niger

What do you do when you get a bunch of St. Patrick’s Day party supplies donated to the hospital? Have a photo shoot. Obviously. One of the kids said, “Are we celebrating CURE?” when he saw all the green stuff. I said, “Sure!” because we’re always celebrating over here. With each healed child, we celebrate. So happy St. Paddy’s Day and happy CURE Day, too! :)

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Aramatou’s last surgery

Aramatou has been at the hospital now for exactly a year and a half. In just a couple weeks she will undergo her final surgery. She has had many surgeries over the course of her stay at the hospital and she can’t stop talking about how excited she is for the 24th of February (the scheduled surgery date). Almost every time I see Aramatou, she brings it up. She can’t wait to go home and show everyone her straight legs. She said, “I can’t believe my legs used to be so crooked. When you look at my legs now, it’s even too hard for me to believe what they used to look like!” We talked about how each day that she has been at the hospital has been one step closer to her full recovery and each day she waits for her last surgery is like a little celebration because she’s that much closer to being fully healed.

We decided in an art therapy session this week that what better way to count down to her last surgery than to make a calendar that she can mark off each day until she reaches the big day. She was so excited as we made the calendar together. She kept saying, “I will be so excited to wake up each morning so that I can cross off the day! It will even be hard for me to sleep, knowing I get to cross off another day the next morning.” I can’t imagine what it must be like living in a hospital for over a year without any family members around. Aramatou is probably the strongest person I know. She has come through so much and she is fighting through to the last days with more strength and energy than when she first came.

Let’s cheer her on as she is so close to being done. Will you remember to pray for her in these next few weeks? Mark your calendars everyone! February 24th, and in the days leading up – Say a prayer for Aramatou!

Aramatou with her calendar.

Aramatou with her calendar.

 

 

 

 

 

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Gotcha Day #2

It’s been two years since Leon joined our family and it’s been the wildest two years of our lives. Leon has brought more love, spice, and flavor into our home than we ever knew was possible. He was just 4 months old when we got him… he was a fireball then, and he’s a fireball now. Happy Gotcha Day, Leon!

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Apparently these guys got the memo about the party colors!

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When Leon saw me put the sign up, he immediately said, “Oh, cake!” (not knowing I had made a cake). He is certain the two go together.

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Leon was fast asleep for his own party. When he woke up, Ethan and Zara went to get him out of bed. I don’t think he’s ever been happier to wake up from a nap.

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Leon was mostly into the candy corn.

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He’s getting used to this “blowing out the candles” thing: So far, 2 Birthdays & 2 Gotcha days.

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We sang, “Happy Gotcha day to you…”

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Leon sometimes acts shy for very quick, flash before your eyes, split seconds.

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821 Drawings

Aramatou has created 821 pieces of artwork since arriving at the hospital 15 months ago. Aramatou is from Mali and she came to the hospital in August 2013 with legs bowed and feet turned completely backward . We have already written about her before. When she arrived, Aramatou was solemn and withdrawn. She has been through a lot in her life, and it was clear that she needed healing that went beyond surgery on her legs. In the past 15 months, everything about her has turned around. After several surgeries and a lot of physical therapy, her legs have been straightened out and her feet are facing in the right direction. Though she still has a ways to go in the healing process, she has come so far. Aside from the physical transformation, her spirit has changed in the process as well. She is no longer solemn or withdrawn – she is the life of the party! Aramatou is so full of joy that it permeates throughout the hospital and is completely infectious. It is hard not to smile when you’re around her.

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Before Aramatou was admitted to the hospital.

Aramatou has been coming to art therapy sessions since day one, and from the beginning she has been making beautiful drawings. She loves to draw flowers, and has been drawing flowers from the start. She draws very interesting flowers, with intricate motifs and designs. Today we sat down and counted – she has done 821 drawings. That is a lot, and actually the real number is higher, because she has probably given away around 100 drawings to staff, visitors and other patients. Aramatou doesn’t have any money, and obviously cannot buy presents for anyone, but she regularly gives away drawings. She is proud of her work, and enjoys giving it away, and even with all that she has given away, she still has 821. She said that she wants to reach at least 1,000 before she returns to Mali. She also said that she plans to take her artwork back with her when she is done here so that she can decorate her whole house with it. Her artwork has been an important part of her stay here in Niger, and she wants to show her family and friends back in Mali the work she did during her long stay in the hospital.

We decided to lay out all of her work on the ground so that we could see it all at once. It took us over an hour just to spread it all out. When we first started lining up the drawings, I thought,”Uh oh we’re going to be here all day.” But I’m so glad we did it. Aramatou was so excited to see her work laid out in that way, and it was visually striking. She kept saying, “I can’t believe I did all this.” It was a powerful image, not just of the fact that she made some pretty pictures, but of all that she has accomplished, and of the fact that she has changed, she has grown and she has blossomed just like the flowers that she loves to draw. After we finished taking pictures of her work she said that she is so excited to be able to show people back home what she has done while she’s been here. It has given her a confidence a boost and she now knows that she is capable of so much. Aramatou will be leaving with new, beautiful legs as well as a whole stack of beautiful drawings.

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Aramatou and friend, Binta laying out her artwork.

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Laying the artwork out in rows made it a lot easier to count.

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The artwork took up almost all 3 sides of the play area outside the art therapy room.

 

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She loves to pose!

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A closeup of some of her work.

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