TOKYO — A woman in her late 20s was rushed to the hospital for an emergency cesarean section after experiencing severe abdominal pain. She was only six months pregnant. The baby boy, born weighing just 622 grams, faced a critical first three days that would determine his survival, according to doctors.
Miraculously, the baby survived those initial days in January 2022 at the neonatal intensive care unit. “His will to live was incredible,” one doctor commented.
However, the challenges continued. The baby needed an artificial respirator and underwent heart surgery two months later. He also required eye surgery due to retinopathy of prematurity, which left him blind in his left eye. Additionally, he was diagnosed with periventricular leukomalacia, affecting his limb movement.
Living in an incubator, the baby fought against the odds. His father held him for the first time more than two months after his birth, feeling the tiny body’s determined breaths.
After nine months, the baby was finally able to go home. Due to weak swallowing abilities, his parents took turns feeding him milk through a nasal tube every three hours. Despite being nurses, this was their first experience caring for a baby.
The baby also needed phlegm suctioned from his throat and enemas due to weak bowel movements. Now, over two years and four months old, he no longer requires an artificial respirator but still needs a feeding tube. He is prone to catching colds and is hospitalized almost every month.
Children like him, needing daily medical assistance, are termed “medical care children.” A law passed in June 2021 aimed to support them and their families, preventing parents from losing work. However, this has proven difficult in practice.
The mother had considered returning to work even before the baby was born. In Akishima, Tokyo, where they live, day care is available from 57 days after birth. But city guidelines established in 2021 require medical care children to be at least three years old and to have been cared for at home for at least 12 months. Returning to work seemed impossible.
The couple sought help from the municipal government, but were met with confusion and were passed from desk to desk.
In November 2022, around the time the baby left the hospital, the Akishima Municipal Government revised its guidelines. The minimum age requirement for medical care children to enter day care was removed.
By November 2023, after completing the required 12 months of home care, the couple’s son became eligible for day care, allowing the mother to return to work.
An official from the city’s day care department stated, “Steps are being taken to ensure safe care, and we will consider further reviews.”
Day care is available only from 8:30 a.m. to 4:30 p.m. on weekdays, so the mother uses her workplace’s short hours provision, leaving work early to pick up her son. This provision, however, only covers children up to age three, presenting another challenge.
On May 24, legal amendments were passed, requiring companies to offer options such as telework, staggered, or shorter work hours for parents of children aged three until they enter elementary school. This law was supported by the ruling Liberal Democratic Party, its coalition partner Komeito, the opposition Constitutional Democratic Party of Japan, and others.
Despite this, the mother is uncertain about her future at work, fearing she may need to switch to part-time work or change jobs.
“Since entering day care, his expressions have become richer,” the mother noted. Her son has taken his first steps and enjoys playing at the park.
The boy is learning to eat by mouth, a challenging process. The family looks forward to visiting Tokyo Disneyland once he no longer needs the feeding tube.
The mother shared, “We haven’t fully accepted his disabilities, but he is growing in his own way. We want to do everything we can to support and watch over his growth.”
