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Zhou Lin's Prognosis
June 16, 2006
Brecken Swartz
Well, several days and several doctors later, I think we may finally have a plan for Zhou Lin's treatment. We've seen some of the world's top pediatric orthopedists at Massachusetts General Hospital and Shriners Orthopedic Hospital in Springfield, Massachusetts (about a 2-hour drive west of Boston), and they have tried their best to come up with the best possible surgical plan to fit Zhou Lin's unique situation. Because the extent of the burn injuries to Zhou Lin's feet is so severe and the Achilles tendons along the back of her legs have contracted to the point where the growth of her bones is forcing her feet under at a dangerous angle, we are lucky that we are dealing with the situation now instead of letting it go any longer. Zhou Lin just got her period a few months ago, and apparently the growth plates in her bones are no longer open, so the condition of her feet will continue to worsen unless we act now.

There are three basic options:

1. Bilateral amputation below the knees. If Zhou Lin were living here in America, this is apparently what the doctors would recommend, because it would provide her the greatest chance at becoming a fully-functioning walker again. People even run marathons on lower-limb prosthetics. But because of Zhou Lin's situation living in a very rural area of China where high-tech medical care is out of reach, this option is less attractive. Having prosthetics with mechanical parts that could break, wear out, or be lost is dangerous, and could leave her on stumps and make it more difficult for her to get around. Besides, the poorly-grafted skin on her legs is fragile and could tear and cause infection if the cottony sheaths between her knee stumps and the inside of the prosthetics are not properly cleaned and maintained.

2. Attaching a frame to Zhou Lin's feet that would slowly pull her feet into a flat position over time. This would entail affixing metal pins into her bones, feet, and ankles that would be attached to a frame that would need to be tightened every day to pull her tendons and bones into a more normal position, sort of like braces do for the teeth. However, this plan is less attractive, because: a) it takes a very long time and there are no guarantees that the frames and pins would be well cared for once Zhou Lin goes back to China, b) it is very painful, c) the pins in her legs could cause infection if not kept sterile, and d) there is still a large risk of the solution not working at all, thus making it necessary to amputate Zhou Lin's legs below the knees anyway. The doctors we spoke with have tried this solution in the past with children in similar situations, and there is as high a chance of failure as there is of success. Plus, it takes forever and would keep Zhou Lin in pain for months, years, or possibly forever.

3. Bilateral amputation of the front part of the feet. Because Zhou Lin happened to be wearing shoes during the fire, the sole skin on the bottoms of her feet is in remarkably good condition -- a fact that has become very important to the doctors here. Apparently, if they amputate Zhou Lin's feet from the arch forward, she would be left with her heels as stumps, on which she could balance and walk short distances aided by a walker or cane. Not only that, but she would be fitted with prosthetic feet which she could put into shoes to allow her to appear to have normal feet and hopefully be able to walk normally without any support. All of the doctors who have examined Zhou Lin agree that this is the best option because: a) the prosthetic feet would have no moving parts and thus be easier to maintain and replace, b) using her current healthy heel and sole skin for the stumps will make it stronger and less prone to tear, c) the amputation and subsequent physical therapy can take place relatively quickly, hopefully having her up and about by the end of the summer.

Since Zhou Lin is almost able to stand on her tippy-toes for short periods at present, provided that she has something to balance on, the doctors feel that she should be able to learn to stand on her heel stumps relatively quickly. She has already been given physical therapy exercises to strengthen her trunk and arms to make it easier for her to use a walker in the short term. We have six exercises we have to have her do three times a day -- morning, noon, and night. She'll get more exercises next week.

Zhou Lin has also been enrolled in "school" at Shriners Hospital to work on her math skills and teach her the basics of English phonics and prepare her for reading. Right now, since she is the only student at the hospital who speaks Chinese, she is working with a teacher one-on-one, but they are hoping to eventually wean her off of translation support from me and Xu Lan and get her into a small class with a few other children. Zhou Lin is nervous about being away from us, of course, but we all agree that she'll do a lot better once she starts to feel more independent, especially once she starts living in the hospital and is seeing the other kids on a regular basis. The hospital has a terrific play room with computers, games, and even an air hockey table, so we are hoping that she can eventually get bold enough to hang out there with the other kids, even though most of them speak Spanish.

(My Spanish is definitely coming in handy now, by the way. Today we met a family at the hospital who introduced themselves as being from the Dominican Republic in Central America. When I told them that Zhou Lin is from China, the mother was excited, saying "People's Republic!" with a big smile and thrusting her fist in the air. It turned out that her son's name is Vladimir. I'm wondering if they are communist. That would lead to some interesting discussions, wouldn't it?)

Our visit to Shriners Hospital in Springfield yesterday was probably the single most impressive hospital visit of my life. I've never met such a truly open, warm, responsive staff -- everyone without exception was unbelievably genuine and nice. One doctor examined Zhou Lin's ankles for a very long time, cradling her deformed feet lovingly in his hands for almost 15 minutes and racking his brains for options. (Dr. Dvaric turned out later to be the Chief of Staff at the hospital!) Another doctor used a Doppler device to listen to the circulatory patterns in the arteries of Zhou Lin's feet so that we all could hear the blood flow. Once the amputation option was being discussed, the Chief of Staff probed to see how Zhou Lin felt about it, and she asked quietly, "Is there any way without cutting off my feet?" The doctor took her question very seriously and brought in two guys from the prosthetics department to explore whether or not some sort of boots could be created into which she could insert her feet in their current ballerina position -- sort of like enormous toe shoes. After ample exploration, it was decided that wouldn't be a good idea, mainly because of the fragile grafted skin on her legs which would likely tear and give her lots of problems, as well as the fact that trying to walk with her feet in such a position would be very painful over time. When the Chief of Staff told us, "If she were my daughter, I would go with the foot amputations," we believed him.

The prosthetics guys at Shriners in Springfield are really fun, so they invited Zhou Lin to their lab/workshop to look around and check out some actual prostheses. Once they showed her a real prosthetic foot, she realized that it looks a lot better than her current feet and brightened up considerably. There's even a slit between the first and second toes so that she can wear flip-flops, and the toenails can be painted if she wants to. While we were there, we found out about other kids in even worse situations than Zhou Lin -- such as a 5-year-old from Russia who has no arms at all, so she drinks and eats with her feet! Zhou Lin was invited to come back to participate in some workshops with other kids from around the world who have lower limb prosthetics, so that she can learn how they cope and deal with life.

So, it looks like plans are under way to do the bilateral foot amputations next week. Zhou Lin's mother is eager for them to get started soon. In the meantime, we have plenty of exercises (both physical and intellectual) for Zhou Lin to work on, and I recently bought her some watercolor paints and a journal, which she is excited about. (When I wake up in the morning, Zhou Lin is already at her desk writing or drawing.)

We found out recently that Zhou Lin's family is in about 90,000 RMB of debt to their friends, neighbors, and family, leftover from the expensive stay by Zhou Lin and her sister in the hospital after the fire in January 2003. Apparently, the local hospital wouldn't even change their bloody bandages without being paid in cash, so Zhou Lin's parents had to beg and borrow from everyone they knew just to cover the basic medical costs. Zhou Lin's father only earns about 300 RMB a month as a day laborer (about $36), on which they need to feed a family of three children, so obviously their own efforts to pay off the debts are virtually futile. Zhou Lin is a fairly good artist, though, so I'm trying to come up with a plan to auction off some of Zhou Lin's pieces of artwork to help the family pay back their massive debts. Today, I found a local framing shop that would be willing to mat and frame her art for us at cost (about $20/frame), which would be helpful.

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