Hope, despair, gratitude, and guilt—reflections as my son turns 5

April 25, 2024 by Neha Agarwal

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Neha Agarwal—Global Program Co-lead, Diagnostics. Photo: PATH

It was the winter of 1951–52, and my grandmother, Urmila Agarwal, was heartbroken. Her 2-year-old son had just died of diphtheria. Had they been living in the United States or Europe he would have been vaccinated against this deadly disease. But they were in India, where rollout of diphtheria vaccine was still more than 25 years away.

My grandmother never talked about the son she lost, never even spoke his name. But I came to learn from relatives that his name was Alok, and he loved grapes. In her grief, my grandmother sought comfort in a new pregnancy and, the following year, gave birth to another baby boy. This fortuitus child survived into adulthood and got a lucky ticket to study in America. This lucky boy was my father.

Fast forward to 2024. Last month, my son celebrated his 5th birthday. It was a big day for him, and a big day for me. Five may seem like any other birthday, but for many cultures it is a huge milestone. And, it has a public health significance you might not be aware of.

For the past century, health experts have viewed two junctures as key determinants in how likely a child is to reach adulthood: surviving the first 28 days of life, and reaching their 5th birthday. While substantial progress has been made in decreasing child deaths worldwide, every year 5 million children still die before their 5th birthday. 5 million children! Just think about it. 5 million kids who never get to start kindergarten or lose their first tooth. 5 million moms who never get to witness their child learn to read or develop their sense of self. It’s simply heartbreaking.

As a second-generation Indian-American working in global health, I am acutely aware of the privileges and opportunities afforded to my son—opportunities that were not available to previous generations of my own family, and that are still not available to so many around the world and in the United States. I am constantly torn between feelings of hope and despair, gratitude and guilt.

For most of my adult life, I’ve tried to reconcile these conflicting feelings. Intellectually I’ve failed miserably, but my heart continues on embracing the tension and honoring the meaning it brings to my life. I hope that tension continues to drive my work in global health. I hope it pushes me to be a good mom and raise my kids to be aware of their privileges and opportunities, and of the injustices still shouldered by so many.

As I watch my son grow, I’ll be thinking of the complicated world we live in, where access to health and livelihood is still staggeringly inequitable. I’ll be honoring my would-have-been uncle, Alok, and his love of grapes. I’ll be soaking in the joy of my son’s curiosity and sense of humor. And I’ll be hoping that humanity continues making progress, and that both my children get to play a part in it.