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EDITOR Hsin-Lin Tsai, MD. PhD, FACS.｜TRANSLATOR Hsin-Lin Tsai, MD. PhD, FACS.｜PROOFREADER Annie Chien｜PHOTO Hsin-Lin Tsai, MD. PhD, FACS.

一對年輕的夫婦抱著孩子走進我的診間，媽媽穿著剪裁俐落的外套，妝容淡雅，眼神卻藏不住倦意，輕聲開口：「醫師，我兒子眼睛常常腫腫的，尿尿也有很多泡泡。我查了一些資料，有人說可能是腎臟病……我該怎麼辦？」

這其實只是初次見面時的第一句主訴，接下來從背包中拿出厚厚一疊轉診的病歷，眼眶強忍著淚水，再問道：「醫師，我可以請我爸爸媽媽，還有公公婆婆一起進來聽嗎？」。孩子五歲，眼神清朗，難掩對白袍的怯生，但身體的細節卻說出了不同的故事。

這位母親壓抑著不安與自責，問的不是病名，而是方向——她想知道自己能做什麼，不想錯過任何一個機會，而站在身後長輩們的目光，似乎壓得她喘不過氣。我在診間見過無數個類似的場景。孩子的病，讓母親彷彿走進未知的戰場，既想奮力保護，又怕自己反而成了延誤的戰犯。

這系列的文章，我們邀請臺北榮民總醫院外科部兒童外科主任—蔡昕霖醫師分享，不是要讓你成為醫師，而是要告訴你：你可以更有方向、更有信心地陪著孩子走這段路，你不是孤軍奮戰。

When Your Child Gets Sick, A Mother’s Choices Deserve to Be Seen
Hsin-Lin Tsai, MD. PhD, FACS.
Chief of Pediatric Surgery, Taipei Veterans General Hospital/ Professor of Surgery, National Yang Ming Chiao Tung University

They walked into my office on a weekday morning—young parents holding a soft-spoken little boy. The mother wore a neatly tailored coat, her makeup was minimal, elegant. But I could see it in her eyes: the exhaustion, the tension she tried to hide. She said, almost in a whisper, “Doctor, my son’s eyes are always puffy. And his urine is full of bubbles. I read somewhere it could be a kidney issue… What should I do?”

That was only her first question. As she gently pulled a thick pile of referral documents from her bag, I noticed her hands trembling slightly. “Could I ask… would it be alright if my parents, and my in-laws, came in to listen too?” she asked, her eyes already welling up. The little boy was five, clear-eyed but visibly nervous. His numbers, his charts, his urine tests told one story, but the mother’s posture told another. She wasn’t just searching for a diagnosis—she was seeking direction. Guidance. Reassurance that she hadn’t already failed.

Behind her, four pairs of elder eyes watched her every move. And I could feel the weight of generations pressing down on her shoulders. I’ve seen scenes like this countless times over the years. A child’s illness turns a mother’s life upside down. She finds herself thrust into a war she didn’t start, forced to fight—but terrified she might already be too late.

Let me say this first, as both a surgeon and a parent:
This article isn’t meant to turn you into a doctor.
It’s meant to help you walk alongside your child with clarity and courage.
You are not alone.

兒童腎臟病的可怕之處，並不在於症狀猛烈，反而是它太過安靜、太容易被忽略。許多媽媽第一次帶孩子去看醫師時常說：「他只是最近比較腫，吃太鹹而已吧？」、「是不是太累所以比較泡泡尿？」……這些看似微小的變化，往往是腎臟發出的求救訊號。水腫可能是體內蛋白質流失導致的體液滯留；泡泡尿代表尿中蛋白濃度異常；而食慾減退、疲倦，甚至成長遲緩，都可能與腎功能下降有關；變得懶洋洋不想動，甚至不願意出門，更可能是腎臟病變導致的貧血而降低活力。

孩子不會用言語告訴你不舒服，但身體會說話。這些訊號一旦反覆出現，尤其持續超過兩到三週以上，就值得深入了解。即使看過了幾次診所或醫院，也許只是被說是感冒、過敏、或者沒睡飽，但你的直覺若告訴你「不太對勁」，請你相信自己。作為母親，你的觀察常常比任何檢查更早發現異常。

Kidney Disease Doesn’t Always Shout. Sometimes It Whispers.
What makes pediatric kidney disease so devastating isn’t how loudly it announces itself—but how quietly it hides.
It doesn’t come with fevers or screaming pain. It sneaks in through puffiness under the eyes, or a few too many bubbles in the toilet. Most moms come in saying things like, “He’s just a little swollen—maybe it’s the salty snacks?” or “Is it just because he’s tired lately?”
These seemingly innocent signs are often early cries for help.
Swelling might be fluid retention due to protein loss.
Foamy urine can signal excess protein in the urine.
Poor appetite, fatigue, growth delays—these may all point to declining kidney function.
Even a child who’s suddenly more sluggish or avoids going outside could be struggling with anemia caused by impaired kidney performance.
Children won’t always say something hurts. But their bodies will speak—if we’re listening.

If these signs keep coming back, especially for more than two to three weeks, it’s time to dig deeper. Even if you’ve already seen a clinic once, twice, or more—if your gut says, “Something’s not right,” trust it.
Mothers often notice the shift before any lab result can.

許多媽媽在面對孩子罹患慢性腎病或罕見腎病時，第一反應是自責。她們問我：「是不是我太晚帶他來？」「是不是懷孕時吃錯東西？」「是不是我沒有注意飲食？」身為醫師，我想請你停下這樣的追問。因為多數兒童腎臟病並非因為媽媽做錯了什麼。很多是基因決定的，可能是先天泌尿系統結構異常，或是免疫系統的特殊反應。你做了你能做的，且你正在做得比你自己想像中還要好。

It’s Not Your Fault—and It Never Was
When mothers hear that their child has a chronic or rare kidney condition, their first reaction is almost always guilt.
“Did I wait too long to bring him in?”
“Was it something I ate during pregnancy?”
“Was I not careful enough with his diet?”
Please, stop right there.
As a physician, I want to tell you: most pediatric kidney diseases have nothing to do with something you did—or didn’t—do.
Many are genetic.
Some stem from congenital anomalies.
Others come from complex autoimmune responses we can’t predict, let alone prevent.
You did what any loving mother would. You’re still doing more than you think.

我曾遇過一位媽媽，在知道孩子將來可能需要長期透析治療，甚至接受腎臟移植後，一連幾週睡不著。她每天查資料、問遍各方，甚至懷疑每一個醫師的說法。後來她告訴我：「我不是真的在找答案，我只是想證明自己還能做點什麼。」那句話，我永遠記得。我也相信，換成是我也是如此。因為這正是母親在面對無力感時，最誠實的樣貌。

醫學不是萬能的。這句話，從醫學院時代我就知道，但直到成為兒童外科以及器官移植醫師後，我才真正懂得這句話的意涵。有些病，我們可以控制，卻不能根治。有些孩子，即使使用最先進的藥物，最後還是會走到末期腎病變，需要長期透析治療，然後等待腎臟移植。過程中，甚至面對反覆住院與併發症。每次我跟家長談到「這是一條長期照護的路」時，總能感受到空氣中的哀傷。

但也是在這樣的時刻，我見證了母愛的另一種樣貌——從「拚命想治癒」的戰士，轉化為「願與孩子同行」的陪伴者。這轉換是非常微妙且變幻莫測，有時只須一瞬間，有時卻又兩者兼具。當你不再以「治癒」為唯一目標，你會開始看見孩子的笑容，每一次的進步，每一口願意吃下的飯，每一次能出門散步的童言童語。這些日常的小確幸，卻是照亮整個家幸福的泉源。

I remember one mother whose son was facing long-term dialysis and a future kidney transplant. She didn’t sleep for weeks. She read every article, searched every forum, asked every doctor—sometimes twice.
Later, she told me, “I wasn’t looking for answers. I just needed to feel like I was doing something. Anything.”
That moment stayed with me.
Because when mothers feel helpless, they don’t collapse. They dig deeper.
That’s not weakness—it’s love in its most honest form.

Medicine Isn’t Magic. But It’s Not Hopeless Either.
As a transplant surgeon, I know too well that modern medicine has limits.
We can slow things down. We can manage symptoms. But some conditions are progressive. Some kids—despite every medication we have—still end up needing dialysis, or a kidney transplant. They face repeat hospital stays, complications, emotional upheaval.
Every time I sit down with a family to explain, “This will be a long road,” I feel the room change. The air grows heavy with grief.
But it’s also in these moments that I see something else:
The quiet transformation of a mother.
She shifts from someone desperate to “cure” her child, into someone committed to walking beside him—no matter what.
She learns to celebrate every bite he eats, every step he takes, every laugh, every trip to the park.
That love doesn’t fade when it faces reality. It deepens.

我記得一位三歲的女孩，在腹膜透析半年後終於成功進行腎臟移植。她的媽媽在手術前一晚，安靜地坐在病房外看著夜景。我走過去，她淡淡地說：「這半年我沒有一天敢真正睡著，但現在我終於能鬆口氣了。」孩子術後康復順利，如今已經升上小學，長高長胖，也變得活潑外向，甚至參加學校各種活動與競賽。那位媽媽後來告訴我說：「我不再害怕未來，因為我們已經一起走過最難的時候。」這些故事提醒我們，孩子的疾病，會成為母親生命裡的一道轉折，但也可能是一道聖潔的光。

很多媽媽第一次聽到需要轉診去醫學中心時，常會覺得自己是不是「太誇張了」。有的一廂情願，祈禱只是小病，沒有必要大費周章。有的則是被親戚朋友勸說「不用勞師動眾，我聽說哪裡有偏方」。但我總是想告訴你：轉診來醫學中心不是大驚小怪，而是勇於負責。

醫學中心不只是提供治療急重難罕疾病的地方，更是幫助你釐清焦慮、確認下一步的起點。有時候，一個詳細的會談與說明，就能讓你安心許多。很多家長在拿到檢查報告後，第一句話不是問「嚴重嗎？」，而是鬆一口氣地說：「終於知道怎麼做了。」。這就是知識的力量。當資訊變成可以理解的語言，你的情緒也會慢慢安定下來。而這一切的開始，只是踏出去，來診間敲了敲門。

你可以選擇相信自己的直覺，當現有診斷讓你感到不安時，你有權利提出第二意見。你可以主動搜尋，去瞭解基本的腎臟病知識，與醫師討論治療方案時更有概念。你也可以尋找適當的病友團體，或讓自己在適當的時候喘一口氣。當你願意照顧自己的情緒，不再把所有責任攬在肩上，你會發現自己其實更有力量。

我始終相信，沒有任何醫學背景的母親，都具備與生俱來，屬於母性最細膩、最敏銳的直覺與智慧。在面對未知時，她會害怕、會崩潰，但她不會離開。因為那是她的孩子。她會查資料、打電話、搬到醫院附近，甚至放下事業，只為了那句承諾：「沒關係，別怕，媽媽在！」

親愛的媽媽，你不需要是女超人，你也不需要一直堅強。你只需要記得，你的選擇有價值，你的愛，是孩子生命中最強的力量。在孩子的病程中，也請你照顧自己。因為孩子需要你，而你，也值得被照顧。

Hope Has a New Shape
I remember a 3-year-old girl who spent six months on peritoneal dialysis before she was finally matched with a donor. The night before her transplant, her mom sat quietly in the hallway, staring out the window. I asked if she was alright.
She replied softly, “I haven’t really slept for six months. Maybe I will tonight.”
Her daughter recovered beautifully. She’s now in grade school—taller, stronger, always the first to sign up for a school play or talent show. Her mom once told me, “I’m no longer afraid of what’s ahead. We’ve already walked through the worst part together.”
These stories remind me:
A diagnosis might change your path—but it doesn’t define your worth as a parent.
Sometimes, it shines a light you never expected.

Asking for More Help Isn’t Dramatic. It’s Brave.
Many moms hesitate when their doctor suggests transferring care to a larger medical center.
They wonder, “Am I overreacting?”
Some cling to hope that it’s just a passing bug. Others are discouraged by well-meaning family members suggesting herbal teas or folk remedies instead.
But let me say this clearly:
Going to a medical center isn’t overreacting.
It’s taking responsibility—with courage.
Big hospitals aren’t just for emergencies. They’re places that offer clarity. Support. Answers.
Sometimes, just one conversation, one thorough consult, one clear diagnosis—can be enough to take the weight off your chest.
And it starts by simply showing up. By knocking on the door.
You can ask for a second opinion. You can learn about your child’s condition and discuss treatment options with confidence. You can connect with support groups, and yes—you can take breaks. You don’t have to carry it all alone.
Because when you take care of your emotions, when you stop expecting yourself to fix everything—you’ll find strength you didn’t know you had.

One Last Thing, Mama:
Even if you’ve never studied medicine, you have a gift.
That deep, primal intuition. That quiet knowing.
You might cry. You might crumble. But you never walk away.
You Google at 2 a.m.
You drive across town for an appointment.
You hold your child’s hand under fluorescent lights.
Not because you have all the answers.
But because you whispered a promise once: “Don’t worry, sweetheart. Mommy’s here.”
And you meant it.
You don’t have to be Superwoman. You don’t have to hold it together all the time.
Just know this: Your choices matter. Your love matters even more.
Take care of your child. But take care of yourself, too.
Because your child needs you—and you deserve to be well.

Curriculum Vitae of
蔡昕霖醫師
Hsin-Lin Tsai, MD, PhD, FACS

現職Present Position：
臺北榮民總醫院外科部兒童外科主任
Division Chief, Division of Pediatric Surgery, Department of Surgery, Taipei Veterans General Hospital
國立陽明交通大學醫學院醫學系外科學科教授
Professor of Surgery, National Yang Ming Chiao Tung University, School of Medicine
美國外科醫學院院士
FACS, Fellow of American College of Surgeons
臺灣小兒外科醫學會理事
Member of Council of Taiwan Association of Pediatric Surgeons
臺灣靜脈暨腸道營養醫學會理事
Member of Council of Taiwan Society for Parenteral and Enteral Nutrition

教育程度Education：
國立陽明大學醫學士
M.D. National Yang-Ming University
國立陽明大學臨床醫學研究所博士
Ph.D. of Institute of Clinical Medicine, School of Medicine, National Yang-Ming University

醫學訓練Hospital Training：
臺北榮民總醫院外科部住院醫師/總醫師/臨床研究員/主治醫師/科主任
Resident / Chief resident/ Research fellow/ Attending physician/ Division chief, Division of Pediatric Surgery and Division of Transplantation Surgery, Department of Surgery, Taipei Veterans General Hospital
英國倫敦帝國大學醫學院外科訪問學者
Visiting Scholar, Department of Surgery, School of Medicine, Imperial College, London, UK
美國邁阿密大學腸胃肝臟移植外科臨床研究員
Visiting Scholar, Department of Surgery, Division of Liver/GI Transplantation, University of Miami, Florida, USA
英國倫敦Great Ormond Street兒童醫院外科部氣管小組訪問學者
Visiting Scholar, Department of Surgery, Trachea Team, Great Ormond Street Hospital for Children, London, UK

器官移植資格 Qualification of Organ Transplantation Practice：
肝臟移植 Liver
腎臟移植 Kidney
小腸移植 Small Intestine
活體肝臟移植資格 Living Donor Liver Transplantation

研究領域Research Interest：
小兒外科，移植與免疫學，幹細胞與再生醫學
Transplantation, Pediatric Surgery, Immunology and Stem Cells