Saturday, January 5, 2013

Julia's Perspective: Patient Screenings

Julia is one of the high-school students traveling with us and participating in the work at the hospital. She's doing a great job of journaling her experience. Here's a slightly edited version of her chronicles of the patient screenings. (Ed. Note: Article has not been fact checked.)

Cerebral Palsy. Congenital defects. Post-polio syndrome. I’ve learned over the past two days that these are the most common cases that the International Extremity Project team sees, indeed these are among most common lower-extremity problems in the third world. Yet the US hasn’t seen a polio case in nearly 30 years thanks to the development of the Salk vaccine.

The hospital we work with -- Can Tho General Hospital -- is beginning to do a better job of pre-screening the patients that are obviously unsuitable for surgery before our team’s screening process begins. Still, we screened 42 patients today, and just 16 are scheduled for surgery. That statistic isn’t quite as bad as it sounds. A few of the 42 were follow-up patients from two years ago, stopping in to express their appreciation while also confirming they don't need additional treatment. Other new patients required definite treatment such as bracing and/or physical therapy, but not surgery.

Inevitably, there are people that we simply can’t help. One in particular sticks in my mind. T is a 34-year-old woman with a radiant, beautiful smile. She can only move around completely bent over, bracing both hands on her knees and distributing her weight evenly across her hips to balance as she shuffles on the sides of her feet. The surgeons could repair her feet, but then she would have to stand on muscles that have not borne been weight in 34 years, requiring months of extensive to retrain her muscles to walk more normally. There is a virtually no chance she would have access to sufficient therapy. Even therapy, there's no guarantee she could regain even the limited independent mobility that has now. Corrective surgery to fix her feet would likely cripple her for life.

The doctors and the physical therapist debated back and forth. They asked her to walk to demonstrate how she was moving. They flexed her feet this way and that, back and forth. Since T doesn't speak or understand English, she had no idea what was being said. She plainly knew this discourse could dictate the future of her ability to move.

The ultimate decision was that the team would not do surgery. According to the physical therapist, if T had been born in the US, her deformity would never have progressed as far as it has. Had T been younger, surgery may have been possible, but at 34 it would cripple her. These are very frustrating moments for the team.

The doctors tell me that in Asian culture in general the custom is to take whatever news, whatever pain, stoically. It was evident that T was trying hard to do just that. When the interpreter finished she silently turned her head away, but not in time to hide the barest glint of the tears forming in her eyes.

In the end I looked away as she struggled to collect herself and slowly make her way out of the room. I figured the world had been cruel enough to her as it was, I would not deprive her of any refuge she found in her pride.

As heartbreaking as that experience was, the next case helped to restore my spirits somewhat. V is a 13-year-old girl with part of her dark brown hair tied up in a little ponytail and hanging down over the rest. One of her feet is normal, but the other has a major congenital deformity the doctors describe it as “lobster-claw foot,” or ectrodactyly.

She has a stunted big toe with no toenail that sticks out at an odd angle making it painful to wear a shoe. Her three middle toes are largely fused, with the middle one appearing almost as a growth out of the fourth. Finally, what in a normal foot would be the smallest toe was the largest and longest, juts out at a strange angle and adding to the inability to wear shoes.

It is possible that V is a second or third generation victim of the toxic dioxins from Agent Orange (sprayed indiscriminately over large portions of Vietnam by US armed forces during the Vietnam war). It is also possible that this deformity arose out of the normal course of genetic mutations.

While her foot will never be “normal,” the doctors will reduce the angle of her large and small toes so that she can wear normal shoes without being in pain. If she can wear shoes, she can go to school. School has been extremely difficult not only because it was hard to walk, but because of taunting and teasing from the other students.

Being able to walk normally provides V with the opportunity to lead an independent life. By enabling her to pursue a full education, the surgery raises her prospects, from her income to her life expectancy, from her ability to care for future children to the quality of her own standard of living.

Seeing V's reaction as the doctors explained what they could do -- and watching her pigtail bounce up and down as she nodded when the doctor asked if she wanted the surgery -- made me think that although we cannot help everyone we see, we really are making a meaningful difference.

~ Julia

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