沒有3D打印的假肢 孩子依舊完美無缺

A few weeks ago, I awoke one morning at 7 a.m. to a flood of messages in my email inbox. All 48 messages linked to a new video that had gone viral overnight. In the video, Robert Downey Jr., star of the Iron Man movie franchise, presented a customized 3-D printed bionic hand to a boy named Alex Pring, one year younger than my son.

幾個星期前的一天早上，我7點鐘起牀後發現，電子郵箱裏收到了大量新函件。這48封信都附上了同一個鏈接，是一段在網上迅速傳播的新視頻。視頻中，《鋼鐵俠》(Iron Man)系列電影的主演小羅伯特·唐尼(Robert Downey Jr.)把一個特製的3-D打印仿生手臂交給了一個名叫亞歷克斯·布林(Alex Pring)的男孩。他比我的兒子小一歲。

Each email said the same thing: “This is amazing! Immediately thought of you.”

這些郵件都包含同樣的內容：“太棒了！讓我立刻想到你了。”

My 8-year-old, Thaddeus, was born without his right hand. And as a mother wanting every opportunity for her child, I had started exploring prosthetic options for him when he was a toddler.

我8歲的兒子撒迪厄斯(Thaddeus)生來沒有右手。作爲一個想要爲孩子爭取一切機會的母親，在他還是一丁點大的時候，我就開始爲他探索可以選擇的各種假肢。

Since he qualifies for state disability, Thaddeus has been lucky to receive access to an excellent team of doctors, occupational therapists, prosthetists, and state-funded basic hand models. When he turned 5, he was overjoyed to be fitted for his first prosthetic: a Hosmer model arm that he wore with a holster and that offered a pincher “hand” grip. He looked like some mini noir-novel detective, wearing the holster over his Pokemon T-shirt. When he shrugged his shoulders, the pincher hand mechanically opened and closed.

由於他符合獲得國家殘疾保險的條件，撒迪厄斯一直有幸接觸到一批優秀的醫生、職業理療師、修復師，並能獲得國家資助的基本款手臂模型。他5歲的時候，喜出望外地試戴了自己的第一個假肢：霍斯莫(Hosmer)手臂模型。它通過皮套穿戴，可以像手一樣夾起東西。他把假肢的皮套戴在寵物小精靈T恤外面，看上去就像是一部黑色小說裏的小偵探。當他聳肩的時候，假手可以機械地打開和關閉。

With the Hosmer model, Thaddeus learned how to pick up heavy objects, ride a bike with both “hands,” and balance better. But it didn’t last long. The prosthetic was too hot for him to wear even in the winter, and the holster rubbed too hard against his shoulder. It was highly uncomfortable and hard to turn certain ways to get a more realistic grip on items. He abandoned it after a year.

憑藉着霍斯莫模型，撒迪厄斯學會了如何抓起重物、用雙“手”騎自行車，以及更好地保持平衡。但好景不長。即使在冬天，穿戴這個手臂也太熱了，而且皮套和肩膀的摩擦太厲害。它很不舒服，也很難轉動到特定的位置，獲取抓握物品更真實的感覺。他一年之後放棄了它。

Last fall, a professor friend of mine and I started exploring the more affordable and customizable world of 3-D printed prosthetics, which held huge promise for Thaddeus. He saw some of the robot-like pieces and immediately got excited.

去年秋天，一個教授朋友和我一起開始探索費用較爲合理的特製3-D打印假肢。這種技術很有希望解決撒迪厄斯的問題。看到了一些像機器人似的零部件之後，他立刻興奮了起來。

My friend and I picked out a blueprint that matched my son’s specific needs and slowly started working on it in our spare time. He had access to his college’s 3-D printing lab. It would be manual, not electronic, to start. And it would be a long road, but held a huge price difference of $50 versus $5,000, and a lot more design options that kids would like: cool colors, superhero aesthetic additions, breathable materials, even lights.

朋友和我選擇了一個符合我兒子特殊需求的設計，在空閒時間慢慢開始了這項工作。他可以使用同事的3-D打印實驗室。一開始的工作要靠手工完成，而不是電子設備。完成這個任務需要很長時間，不過其間的價格差距是50美元對5000美元，而且提供了孩子喜歡的更多設計選項：酷炫的顏色、超級英雄的美學元素、可呼吸材料，甚至還帶有燈光效果。

When I mentioned this project to friends and family, our community rejoiced and begged us to keep them updated on the process. We printed out the initial pieces and kept going.

當我對朋友和家人提到這個項目時，他們都很興奮，懇請我們隨時報告進展。我們打印出了最初的零件，並在穩步推進。

Three-D printed prosthetics for children hold great potential — and they’ve received great press. Hundreds of designs are uploaded every day and shared across the Internet. A “Handomatic” web app [link to: ] exists on the ever-growing e-Nable volunteer site; simply enter your measurements and generate your own customized files to print pieces on a local 3-D printer and start the process. Caught up in the waves of technology, I became an evangelist for 3-D technology and medical design.

3-D打印的兒童假肢有很大潛力——它們也得到了媒體的積極報道。每天有數百個假肢的設計方案在網上傳播和分享。在不斷擴張的e-Nable志願者網站上，有一個叫做“Handomatic”的網頁版應用：只需要輸入你的尺寸，生成自己的定製檔案，就能在本地3-D打印機上打印出零部件，開啓這個過程。我被這樣的科技浪潮淹沒，成爲了3-D技術和醫療用品設計的狂熱信徒。

Local journalists had privately reached out to me, asking for an exclusive human interest piece on Thaddeus and his new 3-D prosthetic once it was finished and fitted. Family had brought it up on vacations. Friends had constantly messaged me on Facebook.

本地的記者私底下聯繫我，希望能在撒迪厄斯的新3-D假肢完成和試戴以後，讓他們寫一篇關於他和假肢的溫情的獨家文章。家人會在度假時提起此事。朋友也經常在Facebook上給我發消息。

Later that morning, when I showed Thaddeus the Robert Downey Jr. and Alex Pring video, I already had visions of him learning how to cut steak with a knife in his new robotic fingers. “Isn’t this great?” I said, smiling. “That’s going to be you very soon!”

那天上午晚些時候，我向撒迪厄斯展示了小羅伯特·唐尼和亞歷克斯·布林的視頻。我早已開始想象他是如何用新機械手指來學着切牛排。“是不是特別棒？”我微笑着說。“你很快也能那樣！”

We were sitting on the couch, and he turned toward me. “I’ve been thinking about it,” he said. “And I don’t want a new hand.”

我們當時並排坐在沙發上，然後他轉過身來。“我一直在思考這件事，”他說。“我不想要一隻新的手。”

“But why?” I was devastated. All that time, research and enthusiasm. He was throwing away a chance to have a five-fingered hand? He was quiet for a moment, then started to explain his three reasons.

“爲什麼？”我極度震驚。我們耗費了那麼多的時間、研究和熱情。他要放棄擁有一隻有五個指頭的手的機會？他沉默了一會，然後開始解釋自己的三個理由。

First of all, he said, he didn’t want to lose his sense of touch. “I don’t want to lose the way things feel.” This caught me off guard. I hadn’t thought of how much he could physically feel at the tip of his wrist, how stifled it was under something else like plastic.

他說，首先，他不希望失去觸覺。“我不想放棄對事物的感知。”這讓我猝不及防。我從沒想過他用手腕尖端可以擁有多少身體上的感知，而在外面套上塑料這樣的東西又會多麼地壓抑。

“I can figure out how to do stuff my own way.” It was true. Thaddeus had figured out how to leverage his arms, feet and neck to open jars, marker and pen caps, and even play baseball. “My brain just works different because of my hand, and I think that’s a good thing.”

“我能找到自己的做事方式。”這是真的。撒迪厄斯已經知道如何平衡手臂、雙腳和脖子來打開罐子、記號筆和筆蓋，甚至還能玩棒球。“因爲我的手，我的大腦也在以不同的方式運行。我覺得這是好事。”

I nodded in agreement.

我點頭表示贊同。

“And my friends like me just the way I am,” he said. If he started wearing a new hand, he explained, it would draw more attention to him — the kind he didn’t want. “I don’t think kids would be my friend because of me. They would just want to play with my robot hand.”

“朋友們也喜歡我的本來面目，”他說。他解釋道，如果開始穿戴一隻新的假肢，他就會受到更多關注——而他不想要那樣的關注。“我覺得，小朋友們就不會因爲我本人而要和我做朋友了。他們肯定只會想和我的機械手玩。”

“So, is that O.K.?” he asked. “That I don’t want a hand?”

“那麼，這樣沒問題吧？”他問道。“我不想要機械手的事？”

I hugged him tightly. For eight years, I had focused on only what was lost with my son. What was missing. What was less than, and what was separated from him. And during that time, he had seen what was there to stay for his lifetime — an arm that simply ended at the wrist — and the possibilities that could grow from that, even if those possibilities didn’t have five fingers. As a mother, I had wanted to add to him, because I wanted the best for him.

我緊緊地抱住了他。八年來，我關注的一直是兒子失去的東西，他缺失的部分，他的弱點，以及他無法得到的一切。而在同樣的時間裏，他卻看到了會與自己相伴一生的東西——一隻止於腕部的手臂——以及隨之而來的各種可能性，即便這些可能性中不包含五根手指。作爲一名母親，我總想給他增加一點什麼，因爲我希望他凡事能得到最好的。

That morning, I finally saw that he was perfectly whole.

但在那天上午，我終於懂得，他本來就是個完美的健全人。