Yesterday 3 blind children came with one of their teachers, Abdul-Salaam from the Wa Blind School for surgery to our hospital. They took public transportation: tro-tro and shared taxi, as there is no money for them to take their own car. They arrived around 5pm, a bit exhausted, thirsty and hungry. We gave them water, got their folders in order and took them up to the hospital floor for admission. The nurse assured us that they will get dinner and breakfast. One boy who is 12 years old needed general anesthesia, so we repeatedly told him not to have breakfast. I checked the teacher’s eye pressures who has glaucoma and then we went home, as he was staying with me.
We had dinner together and he told me a few interesting stories: The attorney general of Ghana is his brother. He is blind and graduated from the Blind School in Wa before going to university. He became blind from measles, which can cause corneal perforation in malnourished children. This is how Abdul-Salaam became interested in working with the blind. He taught himself Braille and to translate from English to Braille. He is one of the few experts in this in Ghana, and because of this, he is held in very high esteem by the blind community, as he saves a tremendous amount of money to the government with his expertise. The Minister of Chieftaincy, Henry Siedu Daanaa, who is also blind and graduated from the Wa Blind School is his brother-in-law. He is a good friend to his blind brother and that is how he met his sister. He talked about the difficult conditions in the school: The government has not been paying them for over 2 months and they owe a lot of money to the food suppliers, some of whom stopped delivering food. They cannot pay the trash collection fee either so the trash is just standing there.
The three patients.
Next morning we went to the hospital together. The children were brought down from the ward. We asked the 12 years old if he had breakfast, he said no. It came out in the afternoon that neither the other two children ate, and they did not have dinner either the night before. (But they did not complain at all.) The hospital has no money to buy even food now. I wish the nurse had told us this.
Students of the Blind School having lunch in the Tamale Teaching Hospital
The surgeries went very well even though they were not easy. The scrub nurse was a student who had no idea what to do, and I had to train him while I was struggling with the eyes. But I got used to this over the past two years, better to keep quiet and try to manage than to make a scene. After finishing the children we operated on an old man with a cataract, the other eye blind, a very difficult case; then a young glaucoma patient, also blind in his other eye. He was also from Wa, so I wanted him to take the children with him, but he is also taking public transport the next day, so he will join Abdul-Salaam.
After finishing the surgeries we tidied up the OR, saw a few waiting patients, bought the children food, and left. I am so much hoping they will see at least a little better tomorrow!
On Wednesday, the 3 teenagers operated on last week returned for follow-up from Wa. All 3 claimed to see better. Mohammed, age 17, who had vision of light perception, improved to count fingers 2 meters, but he has an extremely small eye (called microphthalmos) so we did not expect that much more improvement. Bayiiri, age 12, had the same improvement in both of his eyes. He has been blind since birth, from cataracts, so his prognosis is not too good, as his brain never learned how to see. But he was very happy and his teacher told me he saw him reading the Bible alone! I was a bit sceptical, as he knows only Braille, but the teacher assured me all blind children still know how letters look like.
The third youth, Richard (age 22) could see nearly normally, he could read 2/3 of the distance eye chart and also medium-sized letters! He had been blind for 12 years! He told me the story of his blindness: (A quite common story in the blind school). When he was 10 years old, he went to fetch water, and he experienced a severe headache. He returned home and complained to his mother, who admonished him. Later he became very sick, developed a fever, was taken to the hospital, and when he was discharged, he could see just minimally. Later he was taken to a different hospital, got eye-drops, but his sight did not improve. Then he was taken to a third hospital, he received treatment, after which his remaining vision was also lost. He started to attend the Blind School at age 13. Now he can walk around alone, can read and can do everything a sighted person can do! He was helping out a lot with the other blind children who came for surgery. He was very excited about returning to his village sighted. I wish I had the time to go with him to see his family’s reaction. (Though people in developing countries are quite stoic in general, over the years I saw only a handful of patients who showed their emotions upon regaining their sight.)
I asked Richard about his plans. He said he would probably finish school in Wa, as he is in his last year. The teacher said he can be “mainstreamed” now, meaning he can go to regular school. One of my fears upon embarking on this project was that children will not want to see: They have a safe place in Wa, it is free, they are getting fed (even if it is only rice), get clothing (even if it is torn), have a bed, they go to school, have caring teachers, they have friends, a community. They also receive vocational training. Life is probably much worse in the village even if someone is sighted: No schooling, hard farm work, scarce food, no hope of ever leaving from there, of ever getting a profession…. Well, we will see what happens long-term.
Thursday we did surgery on 3 more children, all three of them bilaterally blind. They were from age 9-12, so they needed general anaesthesia. We also operated on Richard’s other eye – initially I deemed his prognosis so poor that I suggested to operate only on one eye first. Thank God, I was wrong!
The surgeries went well, though we had the usual problems: Patients arrive half hour late from floor, no anesthetist, (finally, after extensive begging one came) no oxygen, no anaesthetic drugs, no gloves. The power went out during surgery, no one to turn generator on, so I had to break sterility and run outside to do it…but by now I am used to these difficulties and they do not phase me the least bit.
Preoperative patient with bilateral cataracts
Postoperative patient
Rosemary, the teacher who came with the children, was excellent, calmed them, fed and bathed them, and took really good care of them. David, a 10-year-old cried horribly for over an hour after surgery, wanted to tear his patches off, it was heartbreaking to listen to it. Finally, we gave him some sedatives. At the end of the day everyone left, the children were taken up to the hospital ward. As I am leaving the clinic (I am always the last one to leave), I discover one of our patients, 12-year-old Lovia, sleeping peacefully on a bed in front of the OR, with both eyes padded. She did not wake up from anesthesia yet. This is Ghanaian postop care – just leave the patient alone till she wakes. I imagined how it would be – waking up totally blind, with two eye pads, alone, not knowing where one is….luckily she did not wake. A little while later the teacher and the house officer came to pick her up.
Preoperative Patient
Postoperative Patient
Next day we saw the 4 postops, gave them eye drops and instructions. It was too early to see any improvement, but I could see the back of their eyes, which is a good sign, it means eventually they should be able to see. They returned to Wa with the noon bus, getting there around 7 pm. The last batch will come next week.
On Wednesday, the three children operated on last week returned for follow-up from Wa. All three claimed to see better, be “very happy” and also function better according to the teachers. One has to be careful though with what patients and family members say about improvement: It is not accepted culturally here to displease someone who made an effort to do good to you. Over many years the only feedback I received indirectly about ANY patient from doctors and nurses who did the follow-up was “Everybody’s fine”. No one ever did poorly, which is of course not possible. In the clinic, when we ask patients if they see improvement after surgery, even those who do not read any more on the chart than before claim they see better. It is just politeness, and also Africans frequently tell you what you want to hear, not the truth. They also do not complain much and are eager to please.
Bilateral Cataract Case.
Lovia, the 12-year-old girl who has been blind since birth saw the same objectively, but looked more animated. Unfortunately we did not have time to assess her thoroughly, but she still could not walk around unaided. David, who had cataract surgery before, but shortly after an inflammatory membrane blocked his vision again, could move around alone now and could obviously see the near chart as he was pointing at the Es on it. But we could not explain him the E-game (show which way the E goes) as he believed it was still Braille and kept on touching the letters to feel them. Prosper saw amazingly well, he could read about half of the near chart.
The last three children for surgery were all teenagers, old enough to withstand local anaesthesia, even if it was in both eyes. It is amazing how brave African children are – they are used to pain since an early age, know it is part of life, and their pain-threshold is unbelievably high. They also do not get too worried or nervous about procedures, they are extremely brave and also stoic.
One of the teachers, Abdul-Salaam returned with the three postops on Thursday, and the other three had surgery. The surgeries went well, and I was also a bit less nervous as I got some experience with the previous cases.
Rose-Mary stayed with them till the evening, fed them, and bathed them. She returned to my house at 8pm, we had dinner together and talked a lot. I am so happy I got to know her– she is an exceptionally caring person, sweet, honest, and unpretentious.
We saw the postops on Friday, snapped some photos (as they say it in Ghana) then they returned to Wa with the tro-tro around noon. I called them a few times since to see how they are, and they are all “fine”! I’ll go and see them in 3 weeks, but this time I am going to go to Wa, it is easier than to have all 9 of them come to Tamale again.
Three weeks after the last 3 children were operated on, we decided to go to Wa to see them. I took my engineer friend, Mashood, who is from a village close to Wa. He could help with the exams and also with translation, as he speaks Wale, the local language.
We took public transport to save money, but this is a bit uncomfortable in Africa. We just missed the tro-tro so we had to wait over 2 hours for the next one. It took us 6 hours to pass the 300 km route. I started to watch a French movie in the dark on my computer to pass the time, “Immoral Tales”. It was basically soft porn disguised as an art movie. After a while I noticed that half of the bus was watching it with me, so I though I better stop. We finally arrived at midnight, without bus-breakdown or accident. One of the teachers, Abdul-Salaam was waiting for us at the station. Next morning we started to work – unpacked the instruments, put the eye-chart on the wall and called for the children. We got an air-conditioned office to use, which was a huge favor!
I just recently finished reading an extremely interesting book: “Crashing Through”, a non-fiction account of an American man who got blinded at age 3 and regained his vision at age 30. As he had visual deprivation for so long, the vision he regained was not normal. He could see motion, objects, colors but he could not recognize faces, could not read (even that he could see the letters separately) or drive, even years after the surgery. He also found it extremely overwhelming to navigate with vision, as it was hard work for him to see – similar to trying to speak a foreign language that one learned as an adult. At one point he regretted ever having the surgery. I also read similar reports about others in the same situation. I got very worried towards the end of the book and thought to myself: “What have I done???” I also remembered one of the favorite phrases of my Mother: “The road to hell is paved with good intentions.” So I was understandably very anxious about the visit.
The children filed in in groups of three. All of them could walk unaided now, except for Lovia. The 12 years old girl had the worst prognosis, as she has been blind from birth. Objectively her vision still remained hand-motion, but she reported to be able to see significantly better. The back of her eyes looked perfectly normal, which made my heart ache, as it means that if her cataracts were removed at an early age, now she could see very well. She can distinguish colors now (probably she learned them during the month since her surgery) and also shapes, she recognizes objects like book, computer, etc and she sees people standing around her. She can even see a picture now and recognize a human face on it.
Mubarak, 20 years old had tiny eyes (called microphthalmos) and already had surgery in one eye. We operated on the other eye, hoping it will get at least as “good” as the first one. He did not improve (the operated eye was even smaller and more abnormal looking than the other) but he said this eye is now helping him to see better in the other eye. I do not have any explanation for this, unless he just said it to make us happy.
Richard, the 22 year old man had the best result: Now he could see 20/40 which is basically normal vision. The interesting thing was that he kept on complaining about his other eye, which improved only minimally. When asked about his future plans, he said he wanted to go to university and become a teacher, but he wanted to continue to study in Braille. (In spite of Ghana being quite poor, it can accommodate blind students at universities.) I made him read, and he knew most of the letters but had problems connecting them. He could read about half of the words though, so I think he will be able to read fluently soon, as he lost his vision when he was 10.
Mayiiri, who had his eyes very shaky (called nystagmus) and turning inside severely, could see a large E from about 3 meters. (Before he could see only hand motion.) He could walk alone now, could see colours, objects and faces. He is mischievous and terrorizes the other children, so they expressed their hope that he would soon improve enough to be able to leave to school!
The rest of the children also improved, two more enough that they will probably be able to return to normal school. We will make another trip to Wa in about 6 months, to see if there was any further improvement in any of them.
With Grace, the Blind School director and Dr Nicholas and Dr Collins, two optometrists who participated in the screening
THE TRIP HOME
We were waiting for over three hours at the roadside in Mashood’s village for the bus. Finally we received a call from Abdul-Salaam that the bus left Wa. In Africa usually there are no scheduled buses, they just leave as soon as they get full, which could take several hours. The reason of it is poverty; drivers are not able to charge more for tickets to cover the expenses of empty seats, as people cannot afford to pay. Usually there are also plastic stools in the center in between seats for people to sit on, to make sure the company makes more “profit” as the profit margin is minimal. For example. a 6-hour bus journey costs less than 6$. People with means travel by car, not by public transport.
The bus arrived and stopped, though there was no bus stop. (We waved as we were told it would be blue.) It was a nice large bus, but Mashood noted right away it did not look “good” to him. He has tremendous experience in Ghanaian public transport as he travels to Kofurudia each weekend to school and back – a 14 hour journey one-way. I soon saw what he meant – the driver’s aid kept on filling the coolant tank with water about every 20 minutes. (The engine was up front, next to the driver). After about an hour the engine started to rattle loudly, and shortly after the bus stopped at the roadside. “The engine got spoiled as there was no oil in it” – declared Mashood as he could make the diagnosis just by the sound of it. I was hoping he was wrong, but he was not. The driver disappeared at a roadside house to make a call for about half hour – I guess he was afraid of being lynched. Then he told us another bus will come soon to pick us up. I thought this to be highly unlikely as African companies rarely have a backup bus to replace the broken down ones. In an hour a large truck arrived and we all climbed on to the open plateau. People were standing or sitting down, some sat on the top of the iron bars covering the sides. I just lied down on the plateau (a bit dirty and hard), put my head on my backpack and listened to a podcast from NPR. It was now late afternoon, the heat subsided, fresh and pleasantly warm wind was blowing on us, the landscape was beautiful, the smell of unspoiled nature penetrated the air…. Then it got dark and I was staring at the moon and the stars. I felt happy and free. Mashood complained about the terrible journey, but I told him it beats a trip in an air-conditioned car. I asked him to imagine how boring my life was in the US if I enjoy an experience even like this!
After an hour and a half we arrived to Damongo, where a small tro-tro was waiting for us. It obviously could not accommodate all the passengers of the original bus. We fought for our lives and succeeded to push on, though I was half sitting in the lap of another man. (Like all other people.) So we left in the dark and a mere 3 hours later we arrived to Tamale. I am not sure though if I’ll risk another public transport journey in Ghana in the near future, we will see!
We just had 8 children come from the blind school for follow-up, so we paid for their trip and food. We operated on them 2 years ago (for congenital cataract) and 2 already left the blind-school! One more could also leave, and all of them improved a lot in their functioning. It was very heart-warming to see them again. Even the way they walked into the exam room, they did not seem to be blind any more, as they could come in and sit down in a chair unassisted. I should write it up as an article but I have no time for it.
We tried to asses their visual function with some questions, as the visual acuity usually does not improve at all, or only minimally unless the cataract is operated on before 3 months of age. It is because of the development of a lazy eye. (The medical name for it is amblyopia, meaning the brain does not learn how to see as it did not get any visual input for a while).
The children gave the following answers :
« Now I can see colors »
« Now I can walk around without help »
« Now I can count money « (i.e, See the amount from the color of the bills.)
« When I go home, I can sweep the house »
« When I go home, I can tell the difference between grass and maize » (I.e, I can weed.)
There was one more blind girl with them with bilateral cataracts, who initially did not agree to the surgery, but now that she witnessed the others seeing better also wanted to undergo the operation. We performed it (only on one eye for now) and we are hoping she will also improve and agree to the surgery of the second eye.
