Normalcy Bias Prevented Diagnosis of My Daughter's Heart Failure

Dr. Raj Panjabi writes: In crises that develop gradually, we tend to ignore symptoms until they reach an acute peak.

من هنوز این اصطلاح را نمی‌دانستم، اما در اوایل سال دوم زندگی دخترم کارونا، با چیزی که روان‌شناسان آن را تعصب بهنجاری می‌نامند، گرفتار شدم: تمایل به این که همه چیز مانند همیشه ادامه پیدا کند، اینکه هیچ چیز در آینده ما خیلی از آنچه ما انتظار داریم فاصله نگیرد. I already had two healthy children and assumed our third would be the same.

My memories of the first year of Karuna's life are full of joy. پسر کوچکترم سوهاوم گونه‌هایش را فشرد در حالی که با خوشحالی می‌گفت: «تو فقط مال منی، همه مال منی»، درحالی‌که روی فرش پشمالوی کنار تختش می‌خندید و تکان می‌خورد. پسر بزرگترم ابهای در حالی که سعی می کرد اولین قدم هایش را بردارد هر دو دستش را با احتیاط در اتاق نشیمن ما گرفت و سپس اجازه داد تا به او فرصتی بدهد تا خودش راه برود. و همسرم، آمیشا، که هرگز آنقدر خسته به نظر نمی رسید، هرگز آنقدر پر از عشق بی شرمانه به نظر نمی رسید.

It was a year that seemed like it would never end. We had reached the top and now we were here to stay.

But a few months after her first birthday, Karuna started refusing to eat. First he rejected the pureed vegetables and then the fruits. او یک چاله بی انتها برای زیتون بود و عاشق برنج و دال بود، اما فراتر از آن، او فقط زیاد نمی خورد. I thought he was just a foodie.

اما چند ماه بعد، در قرار ملاقات 18 ماهه او، نمودار استانداردی که وزن کودک را در برابر سن آنها ترسیم می کرد، نشان داد که وزن او از منحنی خارج می شود. His weight was less than 97% of children his age. ما باید کاری می کردیمپزشک اطفال در مورد آن به ما گفت، اما ما هنوز خیلی نگران نبودیم.

We started consulting with a nutritionist to see if we could expand his food preferences and started him on PediaSure to supplement his intake. I thought he would be fine. He will arrive. But he got worse.

He stopped eating anything but olives. He became irritable. متخصص تغذیه یک بطری شیر خشک در روز را برای تکمیل میزان مصرف خود، سپس دو بطری و سپس چندین بطری در روز توصیه کرد.

In September 2019, he always slept more and was tired. We started getting calls from his day care center. در حالی که بچه های دیگر با بلوک ها و مداد رنگی ها روی میزهایشان نشسته بودند، کارونا فقط می خواست روی یک تشک در گوشه اتاق دراز بکشد.

وقتی متوجه شدم تنفس او سخت شده است، او را نزد پزشک اطفال بردم، او به ریه های او گوش داد و فکر کرد که ذات الریه دارد. After five days of taking antibiotics, Corona did not get better.

A few days before Karuna's second birthday, Ameesha and I noticed swelling around both her eyes and fluid build-up in her eyelids. She was crying, irritable, and breathing fast, but my parents had flown in from North Carolina to be with us for her second birthday. They looked so happy, so full of love for their first grandchild, so we lit the candles and cut the cake.

Normal bias means that our mind protects itself despite all evidence to the contrary. He says: Even if the situation is bad, it cannot be that bad. It says: Bad things happen to other people, in other places, at other times. He says: Everything will be fine.

But this is a bias, a logical fallacy, a cognitive blind spot.

The next day, we made an emergency appointment at the clinic. There, the nurse practitioner suggested we get a chest x-ray at Boston Children's Hospital.

Ameesha and Karuna drove while I went to pick up the boys. I had just arrived at their school when they called me.

"The x-ray shows that his heart is more than twice the normal size," the doctor said. His lungs are full of fluid."

My own heart jumped and panicked. I had spent my medical career caring for patients with heart disease and other medical conditions. I knew what it meant that our daughter had heart failure.

In crises that develop gradually, such as coronary heart failure, we tend to ignore the symptoms until they reach an acute peak. With vague initial signals and no clear shock, Mobilization retreats.

Crises eventually reach what scholars call a liminal moment (from the Latin limen, meaning "threshold")—the threshold between what was and what must now become.

After the heart failure doctor said, I knew there was no denying it: we were in crisis. Suddenly reality came. Our daughter's life was in danger. Our family teetered on the edge of something tattered and broken. Our sense of security, our sense of normalcy, our sense that everything must be okay because it has been okay—it was all crushed in the few minutes I spent that day on the phone while my boys pulled my legs.

Karuna was moved to the pediatric ICU at Boston Children's Hospital, where Ameesha and I spent countless nights. Those days passed in a blur and sharp and clear moments were interrupted. I talked to cold science doctors. I held Amisha while the nurses inserted a breathing tube into Carona's throat and windpipe. I held my father when he hugged me and he hugged me as sobs shook my chest.

Acute crisis had been established, but he was on nearly a dozen medications to support his heart and still had no clear diagnosis. Her heart cells were infected with parvovirus B19, the virus that most commonly causes fifth disease. At the same time, genetic testing revealed changes in her genetic code, although it was unclear whether this caused her illness.

As for the future, the doctor proposed several scenarios. His condition could worsen. He may need a heart transplant, and if one is not available, he will die. His heart may recover somewhat, but he may need medication to support its function for the rest of his life.

Or it may make a full recovery, although it may take months or years. In the uncertainty, we were supposed to somehow get back to normal life.

Four years after the Corona diagnosis, Amisha and I took our daughter to the cardiologist for her biannual visit. After her recovery, she was off all her medications. Her last heart ultrasound looked normal. I watched her face soften calmly before going to the doctor.

"So he's okay now?" I asked. "Don't we need to go back?"

There is no more certainty today than the day Corona was diagnosed. But maybe that's the point.

Actively reflecting on her situation, I find myself cherishing the little moments with Karuna—watching her play with her brothers or teasing her grandparents—precisely because of the uncertainty inherent in it.

I wish he had never gotten so sick, but I can't imagine if he had gone any other way, I would have been so aware of how precious life is. Our family has built stronger relationships because of life's uncertainty, not in spite of it.