Today was the second day of screening, and we saw 156 patients, bringing the total to 356. We didn’t reach the predicted 400 which is very fortunate. It would only have meant more patients we would have had to disappoint at tomorrow’s announcement of the surgical schedule for Monday through Friday. I just returned to my room after the four-hour scheduling meeting, and though it was very sad to realize how many patients and parents will be disappointed tomorrow, it was also gratifying to see how thoughtful the scheduling team was in making their choices. There are various priorities for deciding who will be scheduled. I won’t go over them here except to say that they go from Priority 1 through Priority 5 with a few sub-groups thrown in, and we were able to schedule only about half of the Priority 1 and 2 patients. Priorities 3 through 5 never made it to consideration. This is the first time I’ve been on a mission where patients who fully qualified for surgery had to be turned away. Other team members said they had experienced this on other African missions and in the Philippines where there is still such a need. In the end, we gave precedence to the older kids and adults over the very young babies with cleft lips. I’m in the process of posting photos to Shutterfly, and if it works, I think you’ll see just how amazing it can be for a teen or adult to contemplate have a normal face. One of the 15 year old boys I screened today was very shy, but on the way out, he leaned over and whispered to the interpreter, “tell her I just want a girlfriend.” Somehow I managed to keep it together to continue to see patients, but here this boy is, at 15, and he had spent his whole life being ridiculed and shunned. He is, of course, a normal boy on the inside, and his hopes for the outcome of this surgery are that he might finally have a girlfriend. He is on the schedule, so he’ll be taking the first step toward his dream.
When we were scheduling patients, we looked at age, distance travelled – some drove or road the bus for five days to get here, and how many times the patient had been turned away on previous missions. One 12 year old will finally get his lip closed after missing the cut in 2010, 2012, 2014 and last year. Two more missions have been added this winter and spring, so I hope some of these kids can get treated.
Here are some stories of kids I saw today. There was a 12 year old boy who needs to have his palate closed. Usually above age 10 it’s not that helpful for speech, but his boy had come yearly since age seven and the team felt obligated to do the surgery. However, over the past year, he has developed huge tonsils and sleep apnea. The anesthesiologists were nervous about putting him to sleep without first sending him to an ENT surgeon to have his tonsils removed. The only hooker is that in Madagascar, they don’t use anesthesia for tonsillectomies! They just reach in with a big scooper and out they come. Needless to say, the boy is reluctant.
Isabel, the Intensivist who is actually a pediatric anesthesiologist but is acting as the intensivist this trip, saw a little girl who looked perfectly normal but had an 02 saturation of 79-80. Her heart exam was normal but a chest Xray was classic for Tetralogy of Fallot. An echocardiogram was normal though the expertise in reading it was a bit shaky. Anyway, we had her come back to recheck her 02 saturation again, hoping it had climbed so she could have her surgery. It was still hovering in the high 70’s, and I was about to give up when I noticed a slight sheen to her nails. I took her to the window to get a better look, and I could see that she had on pale gold polish. When the interpreter asked her Mom, the girl said it was her “princess polish.” We got one finger clean and her 02 saturation shot up to 99%. So, a CXR, ECHO and lots of worry later, she’s off to the OR. I still don’t know why her heart looks like a page out of a cardiology textbook, but I’ve decided I won’t spend any more time feeling stupid.
I also saw an 8yr old boy with a cleft palate who had severe rickets. His legs were very bowed and he had thickened wrists and bossing of his forehead. Of course he has had no evaluation, but I’ll see if there’s anything to be had. Then there was a 14 year old girl with a raised black nevus covering the left side of her scalp, neck, part of her face, shoulder and left trunk. She was there because she wanted it removed but also because of gradually worsening weakness of her left arm and leg. At first I couldn’t put anything together, but then I examined her leg and found a large deformity at the hip and shortening of the limb. It turns out that she was riding her bike two years ago and fell off and fractured her femur, likely right through the hip. Her family took her to the hospital, but she was refused care because they had no money. She rested at home until it “healed.” Now she has a “weak leg and arm.” Once again, I’m stunned that any medical person could turn away anyone with her injury. I don’t know if anything can be done for her at this point, but I’ll check out the various traveling charitable organizations. As far as the nevus and it’s possible relation to her left arm weakness, I’ll have to read up. I don’t if these can invade the brachial plexus (nerve bundle supplying the arm,) or not.
Finally, I saw a four year old girl wearing a beautiful white dress. She was sitting demurely with her mother, waiting her turn to be seen. She’s beautiful now and once her cleft lip is closed she’ll be stunning. I don’t know if she’s on the schedule; I hope so.
Well, I’m off to check if the photos made it onto shutterfly. There should be some patient ones and some street scenes taken through the bus window. Tomorrow, after we make the surgery schedule announcement and get the wards set up, We’re going to a craft market.
When we were scheduling patients, we looked at age, distance travelled – some drove or road the bus for five days to get here, and how many times the patient had been turned away on previous missions. One 12 year old will finally get his lip closed after missing the cut in 2010, 2012, 2014 and last year. Two more missions have been added this winter and spring, so I hope some of these kids can get treated.
Here are some stories of kids I saw today. There was a 12 year old boy who needs to have his palate closed. Usually above age 10 it’s not that helpful for speech, but his boy had come yearly since age seven and the team felt obligated to do the surgery. However, over the past year, he has developed huge tonsils and sleep apnea. The anesthesiologists were nervous about putting him to sleep without first sending him to an ENT surgeon to have his tonsils removed. The only hooker is that in Madagascar, they don’t use anesthesia for tonsillectomies! They just reach in with a big scooper and out they come. Needless to say, the boy is reluctant.
Isabel, the Intensivist who is actually a pediatric anesthesiologist but is acting as the intensivist this trip, saw a little girl who looked perfectly normal but had an 02 saturation of 79-80. Her heart exam was normal but a chest Xray was classic for Tetralogy of Fallot. An echocardiogram was normal though the expertise in reading it was a bit shaky. Anyway, we had her come back to recheck her 02 saturation again, hoping it had climbed so she could have her surgery. It was still hovering in the high 70’s, and I was about to give up when I noticed a slight sheen to her nails. I took her to the window to get a better look, and I could see that she had on pale gold polish. When the interpreter asked her Mom, the girl said it was her “princess polish.” We got one finger clean and her 02 saturation shot up to 99%. So, a CXR, ECHO and lots of worry later, she’s off to the OR. I still don’t know why her heart looks like a page out of a cardiology textbook, but I’ve decided I won’t spend any more time feeling stupid.
I also saw an 8yr old boy with a cleft palate who had severe rickets. His legs were very bowed and he had thickened wrists and bossing of his forehead. Of course he has had no evaluation, but I’ll see if there’s anything to be had. Then there was a 14 year old girl with a raised black nevus covering the left side of her scalp, neck, part of her face, shoulder and left trunk. She was there because she wanted it removed but also because of gradually worsening weakness of her left arm and leg. At first I couldn’t put anything together, but then I examined her leg and found a large deformity at the hip and shortening of the limb. It turns out that she was riding her bike two years ago and fell off and fractured her femur, likely right through the hip. Her family took her to the hospital, but she was refused care because they had no money. She rested at home until it “healed.” Now she has a “weak leg and arm.” Once again, I’m stunned that any medical person could turn away anyone with her injury. I don’t know if anything can be done for her at this point, but I’ll check out the various traveling charitable organizations. As far as the nevus and it’s possible relation to her left arm weakness, I’ll have to read up. I don’t if these can invade the brachial plexus (nerve bundle supplying the arm,) or not.
Finally, I saw a four year old girl wearing a beautiful white dress. She was sitting demurely with her mother, waiting her turn to be seen. She’s beautiful now and once her cleft lip is closed she’ll be stunning. I don’t know if she’s on the schedule; I hope so.
Well, I’m off to check if the photos made it onto shutterfly. There should be some patient ones and some street scenes taken through the bus window. Tomorrow, after we make the surgery schedule announcement and get the wards set up, We’re going to a craft market.
No comments:
Post a Comment