On average, about 1 out of every 700 children is born with clubfoot. This is a figure that is pretty consistent everywhere in the world, but in places like Europe and the U.S. children born with clubfoot are treated right away. In places like Niger, most of them do not receive treatment and grow up with severely deformed feet. Most of them are not sent to school and are deemed unfit to work; many are sent into the streets to beg. They have no real hope for the future, and the real tragedy is clubfoot is a deformity that can be easily treated. That is why CURE started CCW (CURE Clubfoot Worldwide), a program that provides training to doctors, physical therapists, and counselors, as well as the materials they need (such as casts, braces, etc.). The idea is to train people and open up clubfoot centers all over the country, so that eventually babies born with clubfoot will have access to treatment close by, no matter where they are born.
Phil Hudson, CURE’s specialty programs counseling manager, came to visit Niger for the first time, so we took him out to see all the different hospitals and clinics that already participate in CURE’s clubfoot program. Right now there are clubfoot clinics at the National Hospital in Niamey, the CURE hospital, the ODI clinic in Niamey, the Dosso hospital, and the Galmi Hospital. He also came to meet with the different hospitals and clinics where we would like to open a clubfoot clinic. We are hoping to open five additional clinics in the next year. Niger is a big country, so this meant a road-trip of well over 2,000 km!
Our first stop was in Tibiri, at a small clinic called Maison D’Espoir (House of Hope). From there we went on to the town of Zinder. We got in pretty late and went right to sleep. The next morning we met with the Regional Director of the Ministry of Public Health. We gave him a presentation of the clubfoot program, and explained to him what we would like to do. He was very favorable towards the idea and it was an encouraging meeting. Then we visited the National Hospital of Zinder. There are only three national hospitals in the whole country; two of them are in Niamey and the other is in Zinder. I didn’t really know what to expect, but it was a really nice place. The grounds were beautiful and new-looking, and everyone was friendly. They got our pitch about the program and really liked the idea as well. They told us a bit about the hospital, and I was impressed. It is big. They have a 720-bed capacity and 635 employees, and they treat just about everything expect for neurosurgery. We left the hospital happy about our meeting and confident that something will come of it.
Zinder is a very interesting town, and even though we were not there long, we did get to see a bit of it. We saw the palace of the Sultan, and drove through the old part of the city which used to be encircled by the ancient city walls. The walls are gone, but you still get the feeling of being inside a medieval walled fortress. It reminded me of the Old City in Jerusalem (expect that everything was made out of mud instead of stone). We also saw lots and lots of trucks taking oil from the refinery back towards Niamey, hopefully a sign of good and prosperous things to come.
Next we went to Maradi. We visited the district hospital there and had a good meeting. We also revisited the Hospital and Leprosy Center in the village of Danja, which is just 15 km from Maradi. We were warmly welcomed, and it was really great to hear a bit more about the history of the hospital at Danja. It has been around for 55 years. It started out primarily treating leprosy patients, but since then drugs have made leprosy more or less curable, especially when they can identify it early on and start the treatment. So now they treat less leprosy but still see around 60-100 cases per year. There is still a lot of stigmatization against people who suffer from leprosy, and the village of Danja still has the reputation throughout Niger of being filled with lepers. Many people wouldn’t want to go there just because of that, so in addition to the all the work they do healing the sick, just the fact that the hospital is there is such a great witness of God’s love. They are making a strong statement just by being a presence there standing with the sick and marginalized, and not only standing with them, but investing in them and in their community. We also got to see the new fistula clinic again, and I was impressed again with how nice it is. We were there for the opening, but now we saw it fully operational and full of patients. Fistula patients are also marginalized, so it is definitely in keeping with the mission of the hospital. It is a wonderful place of healing, and it would be great if clubfoot patients could be treated there as well.
After that visit we went to the Galmi Hospital and spent the night. By that point we were pretty exhausted. Every day started at 4:30 or 5:00 AM, and we usually didn’t finish until late, after dark. So we kind of crashed when we got to Galmi. The next morning (very early) we went up to the town of Tahoua, which was really cool. Julie and I had never been there, so we were excited to see another new place. We met with the Regional Director from the Ministry of Public Health there as well, and he was also very receptive to the idea of opening a clubfoot center. Almost everyone we met with said the same thing, “Yes, we would love to cooperate with you, and while you are at it, why don’t you build another hospital here?” It helped to explain to them a bit about the clubfoot program, and about the Ponseti Method, which Phil and Moutari did very well. We are not able to build CURE clubfoot clinics in every region of Niger, but with the Ponseti Method, we don’t need to. It is very low cost, very low tech, and requires almost no surgery. The only technology you need is plaster to make casts and foot braces, which are locally made! It is a procedure that can be done almost anywhere by people who have received the training. The important thing is the follow-up, and that is where the counselors come in.
The counselors are there to support the family as they go through the process of treatment. They are there to offer a helping hand and a shoulder to cry on, and they are indispensable. They are there not only to convince the parents (usually the mothers) of the importance of following the doctor’s instructions but also to help them understand why. Especially when the feet have been corrected and the children are able to walk, it is hard to understand why the braces are still needed at that point, but if they don’t keep wearing the braces, the feet could go back to the way they were. The counselors are there to encourage the mothers and to help remove whatever obstacles may be in their way. We usually think of the obstacle as the clubfoot itself, but often that is the easiest problem to solve. Some mothers bring their children secretly because their husbands do not want them to come to the hospital. Others miss their appointments because they do not have enough money for transportation once a week. Many of them struggle with feelings of guilt because people have told them over and over that they are to blame for their child’s condition. In all of these situations (and many others like them), the counselor is key to the whole process.
We returned to Galmi and spent the night. The next day we visited the clinic at the Galmi Hospital and observed them treating some patients. Most of the patients had come in for a new cast, but one of the patients was already past that stage and was wearing braces on his feet. They told us that he was the first patient they ever treated and he was back for a checkup. It was really neat to see that when they took off his braces he was up and walking on his own! He was walking all over the place. Still a bit wobbly, but that is because he is two years old and just learning how to walk, not because he was born with clubfoot. He was brought in when he was very young, which is ideal, so now that he is learning to walk you would never know that he had clubfoot before. This was great for the other mothers to see. They were there waiting with their kids to get new casts, and this was the best possible sort of encouragement, for them to see what the end result looks like. It gave them hope for the future, something tangible to look forward to.
The next day we made our way back to Niamey and stopped by at the clinic in the hospital of Dosso. It was a very nice visit, and their team does a great job. They come in every Saturday, their day off, just for the clubfoot patients, and they told us that the night before there had been an emergency. They worked from 11:00 at night till 5:00 in the morning, and now they were back, at 11:00! Talking with them, and seeing them interact with the patients, you can really tell that they sincerely care about them and are very dedicated to their work.
Overall it was a great trip. We came back to Niamey tired but happy. Phil went on to Tillabery (West of Niamey) and then saw some of the clinics here in town (including the clinic at the National Hospital and the one at the CURE Hospital), but we stayed behind on those outings. It is kind of hard to evaluate the clubfoot program in Niger as it is so widespread, and every clinic is different, each with its own strengths and set of challenges. Obviously there is still a great distance to go and there are things to change and things to improve, but overall the program seems to be doing well and is continuing to grow. Moutari told us that the projection for the first year was to reach 100 patients. Since the program was launched in October (when the first training took place), they have now treated their 144th patient! That was great to hear and only a small indication of the possibility of growth. He said they are hoping to double that number in the second year, and eventually reach the point where every baby born with clubfoot in Niger will have access to treatment. That goal is still far off on the horizon, but it is possible, and what we saw on this trip was very encouraging.
Originally posted at: http://joshjulieblog.wordpress.com/2012/07/22/clubfoot-roadtrip/.