That would probably not have been our reaction if you would have told us seven years ago that we would have multiple pairs of prosthetic legs in our house.
In early 2009, we were researching China’s special needs adoptions after adopting twice through the non-special needs program. Some of the special needs just looked too scary and seemed way beyond our family’s abilities. There is something about raising your hand and saying “we can handle that” versus a child being born into your family with special needs. It just seemed presumptuous somehow. Then as we looked over an agency’s special focus group of children and watched the accompanying videos, we saw him. He was “eight years old and he can walk”. When the narrator of the video said that, we automatically glanced at his feet, well that was unusual, he didn’t seem to have any! Instead, it seemed that his legs were wrapped in ace-type bandages with no feet or shoes.
The interviewer talked with him and he seemed engaged and confident, a bit different from the other young boys that were also interviewed. After the interview, he stood up on those wrapped limbs and walked across the room. We were intrigued and felt the urge to test the waters and see if China would allow us to adopt “one more time”. When we received his file, we found out that what had seemed to be foot-less legs were actually feet that had at one point been burned and the resulting contracture scars had distorted his feet allowing him to only walk on his heels. His right hand had also been burned and he had similar distorting scars on his right hand.
Fast forward to September 2010, we took four of our children and went to adopt Joseph. A friend had advised us to talk with the doctors at Shriner’s Hospital in Philadelphia. I emailed the pictures to one of the doctors and he said, “Yes we can help, set up an appointment when you get home.” (They now do in-take a bit differently) We had seen from his updated photos that China had crafted prosthesis for him, but we were curious as to how they would fit because we had the photos of his legs.
We soon realized that his prosthesis were not made for walking or climbing. Every evening he had new blisters or raw spots to show us, we really were clueless how to make him more comfortable. I even had to try to buy bandaids and gauze in China. That was an interesting pantomime! Let’s just say the quality of their gauze wasn’t what I was used to.
We were home a few months when we made our first trip to Shriner’s, and the doctors there convened and discussed treatment options. They and we finally came to a tough decision. We would wait awhile (no rush) and then amputate. Meanwhile they would build prosthesis that would fit around his legs. The new prosthesis extended up to his knees, his old ones only came mid-calf.
The prosthesis leg is made of carbon fiber and very hard. The new legs were lined with a foam cushion; a removable plastic plate covered the front of his leg, allowing his real feet to fit inside his leg. The great thing from this mama’s point of view was his new posture. His injuries had left his one leg longer than the other, I could see all sorts of future hip and back trouble. The new legs leveled him up and gave him new stability. The frustrating thing about these legs was that we needed to keep a 4 mm allen wrench at school and in my wallet because the screws on his feet keep coming loose and he would lose a foot at the most inconvenient times! They told us that these feet were a temporary measure until he was ready to have the amputation surgery.
We bonded, learned English, went to school, worked on bonding (yeah said that twice) and then reluctantly made the date for surgery for July 2011. We also had surgery for an external fixator on his hand in June in an attempt to give him some flexibility to his wrist.
A small piece of wisdom to help prepare you and your child for surgery, especially if they only have a small amount of English: teach them multiple words for the degrees of “hurt”. Pain management was a challenge in those days after surgery.
After about 10 weeks, he was fitted for new legs! It was really going to happen! He would really walk again! There was a time that he did not believe it would ever happen. During that time, he wore pressure socks to help shrink his leg as much as possible before the pattern was drafted. The new legs consisted of long stockings, sort of like tube socks, but more fitted. Then a foam liner is pulled into place over the socks, then that is pushed into the prosthetic. The fit is important because the “tightness” is really all that is holding the prosthesis in place. The socks come in various thicknesses but the goal is to be in the thinnest socks first and then have the option to add a sock to perfect the fit.
The first set of “real” prosthesis after surgery were expected to only fit him for about six months because his calf muscle was no longer used and would shrink over time. I think he wore up to four socks on each leg by the time the next set of legs was ready for him that summer. There were issues of skin breaking down, sore spots and bone overgrowth. The hardest thing was to make him understand that frequent washing (yes, everyday) was necessary for the health of his legs. His burn-scarred skin is supposedly more prone to blistering and other injuries and, a few times, he needed to bandage certain spots, but never needed to completely stop wearing the prosthesis.
The cool part of prosthesis is that you can decorate the leg part with fabric of your choosing. So he has had “wooden” legs, legs lined with basketball fabric, and his current legs are undecorated carbon fiber (looks like an expanded rope).
He pretty much participates in any sports he chooses and with practice and some PT has learned to walk smoothly and most people don’t think about his slightly different gait. Running is still a bit of a challenge and he will never be as fast as he would like.
We usually try to time the fitting and manufacturing of the new prosthesis over summer vacation because it involves at least two, maybe more trips to Shriner’s for fittings. Occasionally, we ended up making more trips especially the spring that he broke his foot, twice. The prosthesist told us that it is very unusual for a teen of his weight to actually break the metal in the feet. After having him break feet the second spring in a row, they switched suppliers and so far, so good! We have an appointment for re-evaluation the first week of June, and I will have them checked then.
The cost of prosthetics is a consideration. We have not needed to pay for his prosthesis up to this point. Shriner’s has covered the cost, but after he turns 18 we will need to be sure to have insurance that assists in the coverage of prosthesis. After he is no longer growing, he should not need new prosthesis every year. There are grants available to help in the cost of “sports” legs, the famous blades, and different types of attachments for skiing or swim fins. Challenged Athletes Foundation is just one of the organizations that will help you wade through some of your questions.
From what I’ve observed, having only one prosthetic leg is not quite the same challenge as wearing two prosthetic legs. The site of the amputation affects the ease of adapting. The common amputation sites are ankle-level (known as Boyd or Symes amputation), transtibial (mid-calf) through the knee, and trans-femoral (above the knee). If the amputation is through or above the knee and the prosthetic requires a knee joint, it is more difficult for the patient to learn to walk again. Our son has a Symes amputation. Some children find it easier to walk without their prosthesis that has not been our experience.
As a special need, this is not considered a “simple” one. But, today we would consider the “older-child” part of the adoption as the most difficult part of our experience. The prosthesis are just a part of getting dressed though changing pants or shoes can be a slow process. In less than a year, he will be 16 and in PA that means one thing, LICENSE! That is going to present some challenges. So far, in our research it looks like he will need to get hand controls because he has bilateral amputations.
I would say that living with amputations is totally doable and the help of a good prosthesist makes life almost simple.
— guest post by Christine
At NHBO, we love Family Stories. And we know our readers love them, too. Beyond being encouraging and informative, Family Stories shared here have actually resulted in children coming home to a forever family. If you’ve adopted a child through China’s special needs program, we hope you’ll consider sharing your family story. It just may be the reason another family considers that very special need.