My daughter's pediatrician researched on the topic of "tsukisoi", care of child by family while hospitalized. (This can mean that a family member is required to be with the child 24 hours a day.)

"Kokuritsu iryou center - no need tsukisoi
Toranomon Byoin - no need
Saint Luke's kokusai Byoin - essentially no need but some case tsukisoi
Nihon Red Cross hospital - case by case
Toritu bokutou Byoin - case by case

Japanese large hospital adopt complete nursing care. So hospital cannot demand tsukisoi from the patient's family basically, but it is difficult to care sick children all the day by few nurses. Sometimes a mother have to do tsukisoi and have some problem because she has other children to care for at home and no one else to help her, or she is working. It is difficult problem. For sick children it is better if mother can be with them I think. But the life of mother or family has to be considered."

For those of you who have had children hospitalized please consider sending in some kind of summary of what happened, and the name/address of the hospital.

Our 4 month old son came down with Kawasaki syndrome. Went to Saitama Idai Hospital (monolithic in size). Child was in a room of six beds. Almost every child had a parent there 24 hours. I feel that the parents presence almost totaly eliminates fear in the child. It also allows you to understand what is happening with your child. I think there is even a healing benefit that occurs by being surround by the good and warm vibes that a family member gives off. For sure the nurse will find some English speaking doctor to talk with you. The hospitals are loaded with them. If you are there all the time you increase you chances of meeting them.

For sure if you have 3 other little ones at home this gets problematic but it is worth at least a partial effort.
Thanks.

John Bayles
Tengu Natural Foods

I have had two very different experiences with staying with my daughter while she was in hospital. One was terrible, the other, much better.

After having a blood test at Seibo (where they have no hospital facilities for children) we were referred to:

Tokyo Women's Medical College Hospital (Tokyo Joshi Idai, 8-1 Kawada-cho, Shinjuku-ku, Tokyo)

At that time our daughter's illness was not diagnosed but we were told it could be anything from leukemia to Kawasaki's disease.

The pediatric ward was in an old Victorian style building which was not just old but dirty and ill-equipped. Our doctor and the nurses were competent, and I don't have anything negative to say about them. The system there requires that at least 1 parent be there to take care of the child. Of course I had no problem with that (our daughter was 14 months old at the time) and at that stage of her illness wild horses couldn't have dragged me away from her. We had a private room which cost 10,000 yen a night which included a refrigerator in the room. The trouble for me and my husband was the lack of consideration for the care-giver although we were expected to be there for 24 hours and do much more than "be" with our child.

There was no bed or bedding provided for us. There were some old chairs covered in cracked plastic that we could put together to make a bed or we could squeeze in the bed with our daughter. They did not provide any meals for the caregiver. This is hard when you can't leave the room to buy food! When we asked the nurses if we could leave our daughter alone (while she slept) for 10 minutes to get a bento it was met with much teeth sucking--which means "no, not really". Luckily there were 2 of us so one of us could buy food for the other in the morning or evening and we could keep lunch in the fridge. (The food at the hospital shop makes 7-11 look like a 3 star restaurant).

There were shower facilities but adults were only allowed to use the shower between 9am and 6pm. You had to make an appointment to use it too! It was closed on Sunday.

There was no telephone in the room, you had to use one down the hallway. Again--very difficult if you are alone with your child since you can't leave the bedside.

We, as caregivers were expected to give Emily her medicine. They gave us the medicine in packets but it was up to us to mix it with gum syrup and administer it. We had to weigh her diapers and write down the weight on a chart. We had to keep track of what she ate and write it down. The provided her meals and milk but we had to take the dirty dishes to a FILTHY kitchen and scrape the dished clean and put them in a pile.

The equipment was so old in this hospital. The machines that regulate the IV drip kept breaking down and literally every 30 minutes or so an alarm would sound to notify the nurses that they had to reset the machine. This isn't so bad in the daytime but at night it was awful.

If your child is in hospital for a relatively short time, just a few days or a week or so, then this is not so bad. Emily was in this hospital for a month. By the end of the month both my husband and I were exhausted (we took turns spending the night) but I spent the weekdays there.

Finally she was corrrectly diagnosed (hemophagocytosis, a blood-related immune disorder) and was sent to Kokuritsu Iryou Center (a national pediatric hospital near Seijogakuenmai Station on the Odakyu Line http://www.ncchd.go.jp/). It was a life-saver for us. It is a fullcare hospital. They actively discourage parents from staying the night (but you can if you really want to) because they want the parents to be well-rested and in good spirits for their child. At first I was very worried about this. Even though it was bad in the old place, I was worried about my daugher spending the night without me.

In the end she spent about 3 months in this hospital. Leaving her was hard every night, but we needed the break and I totally trusted the nurses and staff there. I spent the entire day there, so I got to know everyone quite well.

They have 4 children to a room. The rooms are big with lots of natural light (we had a view of Mt Fuji!) There are plenty of nurses on duty--all very caring and competent. They have students nurses and volunteers who play with the little babies whose parents can't be there for some reason (work, other children) and there is a nursery school teacher who organizes crafts and games for toddlers and older kids. There is even a school in the hospital.

The nurses take care of everything. They give the medicine themselves (what a relief!) And all the equipment is new, clean and state-of-the-art. If you want to nip out and have a sandwich, they will take care of your child, no problem. Our doctor was just as concerned for our (the parents) wellbeing as our daughters and was always asking me how I was holding up.

My advice is that even if you have one non-working parent -- and who therefore has the potential to stay 24 hours with your child -- you should still look for a total care facility. At least you will have the option of going out for a meal or a shower--even if you do end up staying most of the time at your child's bedside. It is a very stressful time for both partners. You need your sleep too and your time together especially if your child is in hospital for an extended period of time.

Sorry for the long post but I hope the information helps someone.

I just heard an example of a friend (not a child) who had a back operation about 15 years ago. He was hospitalized for about a month (only!). He was immobilized on his back for a lot of that time. His wife could not do the tsukisoi duties for him due to other responsibilities, but the hospital gave him a phone number he could call for hiring an attendent. The woman who came was about 60 years old and stayed with him 24 hours a day. She put down a flattened corrugated box with a thin futon on top UNDER HIS BED! I was laughing. These ladies are tiny. I could just seem myself bumping my head everytime I turned over! Anyway her price was Y5000 per day plus he had to order meals from the hospital kitchen for her (he couldn't remember how much extra that cost).

Tokyo Univeristy hospital offers sanitized futons for rent for any caretaker staying with the patient. But apparently Japanese mothers don't seem to mind sharing the bed with the child since they do this at home anyway.

Also, I guess most hospitals could provide extra meals (for a price of course) to be delivered to the room. I imagine this was a service that just wasn't automatically offered and no one thought to ask at Joshi Idai?

I think the mother who would want to be separated from her sick child would be quite the exception.

Someone else told me that at Keio, if you want to stay overnight with your child you have to pay extra for a private room. So it is not a given that you will be required or allowed to stay with your child 24 hours!

If my child (who is now 6 years old) were in a hospital for more than a few days, I would be very relieved to know that I could get a chance to go to work since I am the only breadwinner in our family. But if I were still breastfeeding I think I would reel in all the favors I could and get help at home even without a pop-up grandmother in my back pocket!

This is a long article, but I am very worried that The Japan Times on-line will take this off-line very quickly so I am reprinting it in entirety here. The key date is March 26 (for the symposium).

International symposium to focus on kids' health
By Angela Jeffs

As director of the Department of Interdisciplinary Medicine at the National Center for Child Health and Development in Setagaya,Tokyo, Dr. John Ichiro Takayama is right now an especially busy man.

Dr. John Ichiri Takayama, one of the rare doctors who believes in treating the child rather than just the disease, will chair an international symposium on the organization and financing of children's health care March 26.

He is preparing to chair the Third International Symposium on Child Health and Development, to be held at the center in English with simultaneous translation March 26 from 1:30 to 5 p.m. The theme: "Organization and Financing of Children's Health Care in the 21st Century."

"There will be addresses on various issues," John explains, "such as caring for children with chronic illness, how hospitals are organized and managed in Japan and North America, how best to balance academia and clinical services, and the role of children's hospitals in the community. In conclusion, I will lead an open discussion."

His fluent English and cosmopolitan ease is the result of a complex heritage and upbringing. According to his father, John was born on a national holiday, with the cooperation of a security guard at Mitsubishi Electric. "With most businesses closed, he helped us get to Red Cross Hospital in Hiroo in time."

Raised in English, he went to school at St. Mary's until the family moved to America. "My father thought a few years would better prepare us for college in the States." Already interested in medicine, John dreamed about going to work in Africa like Hideo Noguchi, who researched -- and died of -- yellow fever. "No one pushed me to be a doctor. Rather, my parents supported me."

He entered Yale to study psychology and biology. "In Japan students go straight to medical school. In the U.S., four years of college first, to learn about life." His senior year thesis was on hyperactivity; after graduation, to better understand child behavior, he took a year off and worked at a halfway house for troubled teenagers.

Afterward he spent a month in Nagano -- "milking cows to clear my mind" -- before heading back for a second four-year academic stint, this time at a private medical school in New York. While treating players from the Yankees baseball team, it also provided health care for drug users, trauma victims and the homeless suffering from hypothermia. "Working there provided a perspective of the social situation among people of many backgrounds, and we had to take responsibility."

Deciding to specialize in pediatrics, he returned to a medium-size program in New Haven, Conn., that offered a balance between primary care and subspecialty care. Taught by professors rather than fellows, the following three years were academic but eye-opening. In his final year he was promoted to chief resident and learned how to "calm people down."

His trip back to Japan for a month in 1989 proved a turning point. "I met my mentor, Dr. Nobutake Matsuo, who told me I could be useful here. He was associate professor of pediatrics at Keio University in Tokyo." But practicing here required a Japanese license. "I had to study all over again. My Japanese wasn't so good and the medical jargon very tough."

With a fellowship in general pediatrics in Seattle, he was not yet ready to leave the U.S., researching both children in foster care and disenfranchised populations in general. "I believe that when a person's born into privilege, they have a responsibility. My father's very philanthropic with two foundations, one helping Asian students educationally, the other researching dementia."

After spending 1992 to 2002 working his way up to associate professor in the Faculty of Pediatrics in San Francisco, he decided to take a long sabbatical. "My mother was not doing so well and as the eldest son I felt I should come back."

Dr. Matsuo had just been appointed dean of NCCHD after a merger of facilities. When built, NCCHD had a vision of interdisciplinary medicine, a system in which a generalist coordinates care of patients. "The university system here says you have to be a subspecialist to survive, but Dr. Matsuo and I believe otherwise. It makes our department of interdisciplinary medicine one of a kind."

John believes in a holistic approach, treating the child as an individual rather than a heart or a liver. "Because a subspecialist cannot take care of the whole person, generalists rely on them as consultants. After all, some patients need three or more experts to figure out a problem. I'm a generalist. Limitations are not my specialty."

Of course there are many who do not believe in what he is doing. But he insists that Japan must look at the bigger picture. "What sort of children are we trying to raise? Every prefecture is trying to have a children's hospital. These should be community hospitals, putting children's needs first, which is why we're hoping many kinds of people will attend the symposium: parents, teachers, nurses, pediatricians, ministry officials, businesspeople, advocates. You could say we are trying to make a point."

He says Japan has five fast-rising problems in the health arena:

As director of the Department of Interdisciplinary Medicine at the National Center for Child Health and Development in Setagaya,Tokyo, Dr. John Ichiro Takayama is right now an especially busy man.

He is preparing to chair the Third International Symposium on Child Health and Development, to be held at the center in English with simultaneous translation March 26 from 1:30 to 5 p.m. The theme: "Organization and Financing of Children's Health Care in the 21st Century."

"There will be addresses on various issues," John explains, "such as caring for children with chronic illness, how hospitals are organized and managed in Japan and North America, how best to balance academia and clinical services, and the role of children's hospitals in the community. In conclusion, I will lead an open discussion."

His fluent English and cosmopolitan ease is the result of a complex heritage and upbringing. According to his father, John was born on a national holiday, with the cooperation of a security guard at Mitsubishi Electric. "With most businesses closed, he helped us get to Red Cross Hospital in Hiroo in time."

Raised in English, he went to school at St. Mary's until the family moved to America. "My father thought a few years would better prepare us for college in the States." Already interested in medicine, John dreamed about going to work in Africa like Hideo Noguchi, who researched -- and died of -- yellow fever. "No one pushed me to be a doctor. Rather, my parents supported me."

He entered Yale to study psychology and biology. "In Japan students go straight to medical school. In the U.S., four years of college first, to learn about life." His senior year thesis was on hyperactivity; after graduation, to better understand child behavior, he took a year off and worked at a halfway house for troubled teenagers.

Afterward he spent a month in Nagano -- "milking cows to clear my mind" -- before heading back for a second four-year academic stint, this time at a private medical school in New York. While treating players from the Yankees baseball team, it also provided health care for drug users, trauma victims and the homeless suffering from hypothermia. "Working there provided a perspective of the social situation among people of many backgrounds, and we had to take responsibility."

Deciding to specialize in pediatrics, he returned to a medium-size program in New Haven, Conn., that offered a balance between primary care and subspecialty care. Taught by professors rather than fellows, the following three years were academic but eye-opening. In his final year he was promoted to chief resident and learned how to "calm people down."

His trip back to Japan for a month in 1989 proved a turning point. "I met my mentor, Dr. Nobutake Matsuo, who told me I could be useful here. He was associate professor of pediatrics at Keio University in Tokyo." But practicing here required a Japanese license. "I had to study all over again. My Japanese wasn't so good and the medical jargon very tough."

With a fellowship in general pediatrics in Seattle, he was not yet ready to leave the U.S., researching both children in foster care and disenfranchised populations in general. "I believe that when a person's born into privilege, they have a responsibility. My father's very philanthropic with two foundations, one helping Asian students educationally, the other researching dementia."

After spending 1992 to 2002 working his way up to associate professor in the Faculty of Pediatrics in San Francisco, he decided to take a long sabbatical. "My mother was not doing so well and as the eldest son I felt I should come back."

Dr. Matsuo had just been appointed dean of NCCHD after a merger of facilities. When built, NCCHD had a vision of interdisciplinary medicine, a system in which a generalist coordinates care of patients. "The university system here says you have to be a subspecialist to survive, but Dr. Matsuo and I believe otherwise. It makes our department of interdisciplinary medicine one of a kind."

John believes in a holistic approach, treating the child as an individual rather than a heart or a liver. "Because a subspecialist cannot take care of the whole person, generalists rely on them as consultants. After all, some patients need three or more experts to figure out a problem. I'm a generalist. Limitations are not my specialty."

Of course there are many who do not believe in what he is doing. But he insists that Japan must look at the bigger picture. "What sort of children are we trying to raise? Every prefecture is trying to have a children's hospital. These should be community hospitals, putting children's needs first, which is why we're hoping many kinds of people will attend the symposium: parents, teachers, nurses, pediatricians, ministry officials, businesspeople, advocates. You could say we are trying to make a point."

He says Japan has five fast-rising problems in the health arena:

Measles, with 50,000 to 70,000 cases a year: "Children need to be vaccinated. With the birthrate so low, we cannot afford to lose our precious children."

Injuries related to motor accidents: "There needs to be more education, with seat belts and bicycle helmets made mandatory."

Sexually transmitted diseases among adolescents: "A recent study in Hokkaido showed a 10 percent rate of chlamydia, compared to 1 percent in the States. It's especially high among school girls." Also rates of HIV infection are rising here faster than in the U.S. and Europe. "Japan is on the verge of an epidemic."

Attention deficit hyperactive disorder and depression-linked disorders are also on the increase: "There's poor parenting; little leadership in school or at home." Lack of confidence in parenting skills, he continues. is a huge problem. "Common sense has gone out the window." (Not in his home, however, where three generations -- including his 9-year-old daughter -- live together in harmony.)

Having said all this, John is insistent that he seeks to be supportive, not critical. "I am an optimist. I see every challenge as an opportunity."

Department of Interdisciplinary Medicine NCCHD, 2-10-1 Okura, Setagaya-ku, Tokyo 157-8535; telephone (03) 3416-0181; fax (03) 3416-2222; e-mail takayama-j[at]ncchd.go.jp

The Japan Times: March 12, 2005
(C) All rights reserved

(The attached poster for the 26 March symposium is an enormous .pdf file that can not be reproduced here. In fact it was so big, I didn't even download it. Admin)

Date: Thu, 17 Mar 2005
From: yasuo nemoto
Subject: Int'l Symposium to focus on kids' health
To: admin[at]tokyowithkids.com

Hello,
I stumbled upon your website trying to find more about this symposium. After reading some of the discussions in your website, maybe some parents might be interested in the following free symposium which will be in English with simultaneous translation. I wrote to Dr. John Ichiro Takayama for more information and he sent me the attached poster. He also kindly sent me directions. If anyone is interested, they are:

Take Odakyu-line, Express (kyukou) from Shinjuku Station to Seijyo-gakuen-mae (which is the 3rd stop from Shinjuku). As you come out of the station, go right (south exit) and you can either take a taxi or bus number 1 (going to Shibuya) - as you come out of the south exit, the bus stop is on the right side just around the corner (there is a bakery "KOBE-YA" at the right corner). The train takes about 15-20 minutes from Shinjuku, and the bus takes an additional 10-15 minutes.

Hope this is useful. Thank you, Doc O'Connor

The International Symposium on kids' health (bilingual) tomorrow: go to first floor of NCCHD (http://www.ncchd.go.jp/). It runs from 13:30-17:00

Hello. Sorry if this is a bit off topic. I am looking for a great example of a children's hospital in Japan. Bonus points for a hospital that has a unique way of serving children and their families. Thank you for your help! I wasn't sure where else to find suggestions and found your excellent site.

Are you familiar with the National Center for Child Health and Development in Setagaya? It's a beautiful children's hospital with lots of nice touches (interactive wall displays, benches shaped like animals, playrooms, a toy library, etc.) and an excellent staff. I don't know enough about it to know whether it offers any unique services, but it seems like an excellent facility. It is next door to a Ronald McDonald House.

Nagano Prefectural Children's Hospital in Azumino City is pretty famous, and I hear lots of good things about them. http://www.pref.nagano.jp/xeisei/kodomo/access.htm
Here's their May newsletter:
http://www.pref.nagano.jp/xeisei/kodomo/tayori5.pdf
On page 3, they talk about the various volunteer groups/activities that support their patients.