Did I Really Just Willingly Disfigure My Child?

As soon as I saw my son, I immediately felt regret for having made this decision.

Like every parent, my life is filled with making choices for my children. I just never imagined willfully disfiguring my son would be one of them.

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HOW WE GOT HERE

It all began last summer when my wife and I noticed our five-year-old son was experiencing pain in his leg whenever he walked and played. We dismissed it as growing pains or just a minor injury that he would promptly recover from. However, when his discomfort—and his limp—didn’t go away, we took him to get checked out. It was supposed to be a simple doctor visit.

It turned out to be cancer.

Our son had an aggressive tumor in the upper portion of his left leg. The cancer, known as Ostesarcoma, would require surgery and a total of 28 weeks of chemotherapy. But since the tumor had eaten away so much of his femur—and because in order to remove it properly would require extraction of the surrounding areas to create safer margins—there were only five options available to us.

1). Leave The Tumor As Is

This would be the only non-surgical option, and it would mean we’d have to rely solely on the chemotherapy to kill the tumor and any other unseen cancer cells in the surrounding area (and throughout his body). This option was far too risky and too much damage had already occurred to the bone. Since saving our son’s life was priority number one driving all of our decisions, this course of action (or inaction) was not a viable option.

2). Full Amputation

This would effectively remove the tumor, but it would also mean our son would be confined to crutches for the rest of his life because the amputation would be too high to leave a stump by which a prosthetic could be affixed.

3). Steel Rod

A popular choice, but since he just turned six years old, this would require him to return for major surgery (with all its potential for complications) every few years because, as he grows, the rod won’t grow with him. Also, as the doctor explained to us, our son’s pelvis would not accept the rod very well in the socket, potentially leading to future issues with his hip. Additionally, a rod would mean our son would likely have a lifelong limp and not be as athletic as he’d like to be.

4). Cadaver Bone

Similar to the metal rod, a cadaver bone would also require multiple major surgeries over the years. As stated above, this is not something we want to subject our child to. Additionally, cadaver bones have a high rate of infection.

5). Rotationplasty

This is a one-time surgery. It would leave more than enough of his leg for a prosthetic, and as soon as he becomes adept at using his prosthetic, he would be able to run, jump, and swim all on his own. But this option would require his leg to be amputated and then reattached . . . backwards.

Courtesy of Toronto Star Graphics

After weighing all the options, and discussing them with our son, we chose rotationplasty.

It was the only surgical option—besides full amputation—that would require a single one-and-done surgery and had the least chances of infection or complications. And it was the only option that would allow our son to eventually get back to full use of his leg (with the prosthetic) to participate in all the rigorous activities little boys like to engage in. We were confident in our decision.

REGRET

But then the day of the procedure arrived. When I entered the ICU after his nearly twelve-hour surgery, and saw his reversed leg for the first time, I immediately felt regret.

Talking about rotationplasty for months—and looking at pictures and videos of others who’ve undergone the surgery—still didn’t prepare me for seeing my own little boy with his backward leg.

Don’t get me wrong, it’s not like my wife and I were ever enthusiastic about the decision—it was more reluctant acquiescence than exuberant pursuit—but it was still what we chose from among the other, less radical, options.

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My tender little boy was now . . . different.

A limb in an unnatural state like his reminds me of the many disfigured, distorted limbs I’ve seen over the years from those who’ve been mangled in motor vehicle collisions or other destructive accidents. Seeing my son’s new leg left this familiar uneasy feeling in me which did nothing to mitigate my thoughts of regret.

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A full amputation would have been easier to accept because it’s just a missing limb, and missing limbs are much more commonplace in our society today. But a shorter, backward leg? That’s more difficult to come to terms with.

And there’s no going back now. His leg will be backward for the remainder of his life (some may even view his condition as freakish). And his parents actually chose this option.

On the one hand I worry that when he grows up he’ll also feel regret and not forgive his parents for the choice we made. But on the other hand, all I care about and pray for is that he actually gets the opportunity to grow up, with or without regret. After all, we’re still dealing with deadly cancer.

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The most important part of this surgery—the very reason my son had to endure it—was to remove the tumor. That cluster of cells which was determined to take his young life has been successfully extracted, leaving behind scars—both visible and invisible—that have affected and changed all of us.

He’s now over a month removed from his surgery and I still do double takes when I walk into the room—forgetting for the briefest of moments that this is my son’s new condition and his new way of life. But he’s accepted the surgery (as well as his lot in life) with a great attitude. It’s just one more example of how resolute and resilient he’s been through all of this. Even when his parents have been wrecks, he’s stood strong, and his strength has helped his parents cope with this new normal.

CONCLUSION

We are so proud of our son — he’s been such an inspiration to all of us. And in spite of how his leg looks, he is perfect in the eyes of his mom and dad.

The next step in his unenviable journey is getting fitted for his prosthetic leg while continuing chemotherapy treatments. Being able to walk again (something he hasn’t done for nearly six months by the time he gets his new leg) will be a giant milestone. And before long, Lord willing, he will be up and running. When that day comes it will help to confirm that we made the right decision.

Until then, as the days go by, it becomes easier to accept what’s happened. And the feelings of regret aren’t as imposing as they once were. It helps that our little boy is wise beyond his years, and he assures his mom and dad that everything is fine, telling us he even likes his new backward leg. But I hope when he grows up he understands the decision we made was a gut-wrenching one. It was made only after weighing all the options, and it was accompanied with great anguish, trepidation, and fear—punctuated with occasional moments of regret.

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J.L. Pattison is an author, husband, and father. He turns coffee into books at JLPattison.com and he turns his tears into blog posts at The Kohen Chronicles.

A mildly melancholic, increasingly misanthropic, contrarian who cherishes life, liberty, and lattes. He turns coffee and sweet tea into books at JLPattison.com.

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