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Photo Credit: (Er Xiaodong)
LIFE

My baby was born with a rare disease—should I let him die?

A father from Shandong recounts living with a child with a congenital illness

This story is published as part of TWOC’s new collaboration with Story FM, a renowned storytelling podcast in China. It has been translated from Chinese by TWOC and edited for clarity. The original can be listened to on Story FM’s channel on Himalaya and Apple Podcasts (in Chinese only). 

Jiutian, 31 years old, from a third-tier city in Shandong province.

-1- 

A new life

I have a family that would be the envy of many. My wife and I have decent jobs, a house and car, and our lives aren’t exactly stressful. Our older son is already 6; he’s a rambunctious and exceptionally healthy child.

Since he was always jealous of his other classmates and their little brothers and sisters, after careful consideration, my partner and I decided to have another child.

Before we knew it, my partner was pregnant.

Back then, our eldest would chat with the child in my wife’s belly each day.  We also readied a separate room for the children, with everything organized in sets of two.

My mom got to thinking about how she’d have to lend a hand with the eldest when it came to my partner’s post-natal confinement month [a tradition for Chinese mothers after childbirth]. She took special mobility scooter classes and familiarized herself in advance with my son’s route to school.

My dad was no slouch either, he’d say, “After the second is born the five-seater won’t cut it, we’ll need to switch over to a seven-seater. When the time comes I’ll close up my shop and we’ll get the whole family together to go on an adventure!” He’d even thought of a name for the child, ‘Jiayan’ (嘉言, wise words), echoing the phrase “A noble man is wise in words and good in deed.” This expressed his hope for the new baby.

The whole family poured themselves into preparing for this new life on the way.

-2-

Birth

My partner spent 36 painful hours in hospital giving birth to our first child before it was delivered.

So by this second time around we’d done our homework; from pre-natal examinations to maternal nutrition and post-natal care—we prepared everything in advance.

I even took the trouble of booking the family-style delivery room with the best amenities at the local hospital well ahead of time. We also had an epidural injection lined up.

You could almost say nothing was left to chance.

Then at 3 in the afternoon on December 6th 2020, I accompanied my wife into the delivery room. Like before, my wife was in serious pain. Grasping her hand, I called for the doctor to administer the epidural. Under ordinary circumstances it would be another one to two hours before birth occurred, so the doctor sent me off to buy my wife an energy drink.

What happened was that in that 20-minute period when I was away, the baby was born.

I stood dumbstruck. My heart longed first to check in and see how my partner was getting on. But the doctor pressed the baby into my chest, saying “Quick! Hold on to your son, I’ll take your photo.”

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author Story FM

Founded in 2017 by Kou Aizhe, Story FM is one of the most renowned podcast in China. Each episode focuses on ordinary people’s lives and viewpoints, including the difficulties of marginalized people. Through intimate and private interviews, Story FM digs out first-person experiences and lets listeners immerse themselves in another person’s voice and feelings. You can listen to their podcast in Chinese on Ximalaya, Qingting FM, Apple Podcasts, and the 故事FM mini-app on WeChat.

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