YOKOHAMA — Naomi Toyama didn’t hesitate when she agreed to take her 16-month-old son, Keisuke, from Okinawa to Yokohama for a month to receive an advanced operation to cure a congenital disease.

She knew she would be staying at Yokohama Family House, an inexpensive facility that would allow her to visit Kanagawa Children’s Medical Center every day. Keisuke was hospitalized in mid-July.

The facility, owned and managed by Takao and Toshiko Saeki, opened in 1999 on the second floor of their home. It offers three bedrooms, a kitchen and a bathroom for parents like Toyama, who need a place to stay while waiting for their children to recover. The cost is just 1,500 yen a night.

“If our doctor (in Okinawa) had not found this place for us, I would have had to stay in a business hotel,” which would cost many times more, she said.

An additional and even more valuable benefit from staying at the house, according to Toyama, is that she can consult with other worried mothers who are in similar situations.

“I feel at ease talking to other mothers here,” she said, adding she hopes to return soon to her husband and two other children in Okinawa once Keisuke is discharged Monday.

To help more parents like Toyama, three volunteer groups in Kanagawa Prefecture, including Yokohama Family House, are raising funds to build a new facility for parents of children who require long-term medical treatment. Their efforts received a boost last year when the prefectural government agreed to give them a site to erect the building near the medical center free of charge.

“When my 6-year-old daughter was dying (from a brain tumor in 1998), I had no choice but to stay in the medical center during her last days,” said Hisato Tagawa, representative of the nonprofit organization Smile of Kids, one of the three groups. “I can understand how much parents from remote areas need such a facility.”

Toshiko Saeki said her home is currently the only place offering low-cost accommodations near the 419-bed medical center.

Yokohama Family House operates two other similar facilities in the city.

Saeki, who is employed at the children’s medical center, saw that many parents were unable to find low-cost accommodations near the hospital. Thus she and her husband decided when building a new house to turn the second floor into a facility for such needs.

The new facility planned by the three groups will have seven bedrooms, each with a prefabricated bathroom, kitchen, meeting room and play space for siblings.

So far, the groups have collected 7 million yen, or roughly 10 percent of the total cost, through a charity concert in June and donations from individuals.

“We need to increase public recognition” to raise more funds, Saeki said.

The first facility for parents of hospitalized children was built in Buffalo, N.Y., in 1972, and the concept has since spread around the world, according to Family House, a Tokyo-based nonprofit organization that has eight facilities in the capital.

There are about 90 such homes across Japan, with the first having been opened by the parents of a 22-year-old man who died of myelodysplastic syndrome in Chofu, western Tokyo, in 1993, the NPO said.

Many are operated by volunteer groups based on user fees, donations and membership fees. Others are run by municipalities, corporations and hospitals, Family House Secretary General Yoko Ueda said.

But demand still exceeds supply, given that 103,619 people aged under 20 were categorized by local governments as suffering from intractable diseases, including cancer and heart disease, in fiscal 2003.

“Parents in rural areas come to urban hospitals to get advanced and specialized medical treatment for their children,” Ueda said. Many have to stay in hotels or relatives’ or friends’ homes or rent an apartment if they don’t stay in family houses, she said.

In North America and Western Europe, the importance of such facilities is socially recognized, experts say. Some hospitals have accommodations for parents or promote medical treatment at home for young patients.

Shunpei Yokota, a pediatrician at Yokohama City University Hospital, said hospitals in Japan should do the same as part of pediatric care.

“Sick children can become psychologically stable when they are with their parents,” he said. “Parents want to stay as close as possible when they see their sick children crying for them.”

A drastic change in the medical system, however, is needed if the problem is to be resolved, the doctor said.

While most hospitals with pediatric departments specialize in certain fields, general medical centers for children that can treat any type of disease should be built regionally, he said.

“It’s difficult to improve the medical system because healthy people don’t think about a medical system for sick children,” Yokota said. “But we’ve got to make them aware of the need for change.”

In a time of both misinformation and too much information, quality journalism is more crucial than ever.
By subscribing, you can help us get the story right.