A Long Wait Filled with Hope, Only to End in Grief

By Ryosuke Kobashiri and Erika Noguchi / Yomiuri Shimbun Staff Writers

15:04 JST, January 30, 2023

The thought will forever haunt them. “Surely my child would have been saved…”

In a country where the technology for organ transplants exists, only 10% of the population has committed to donating organs despite government efforts to improve the situation. The tragic result is that many children end up dying as they await a transplant. For those who have gone through this heartbreaking process and those going through it now, the key is raising awareness of the situation, with the hope that stories of personal tragedy might spur others to act so that future children and their loved ones can be saved from similar grief.

For two years, Ken Fujiwara waited with hope that his young son Haruki would get the heart transplant that would save his life. It never came.

Instead, Haruki became one of the seemingly endless number of children with serious diseases who die waiting for an organ transplant. That led Fujiwara to want to help raise awareness among the public of the lack of organ donors that could otherwise save lives.

“‘Haru-chan will definitely be saved.’ For almost two years, I believed that and waited,” said Fujiwara, 40, a company employee living in Yamato, Kanagawa Prefecture. As he spoke, he held a portrait of Haruki, his third son who died in December 2021.

Several months after his birth, Haruki began experiencing persistent cold-like symptoms. He was diagnosed with dilated cardiomyopathy, a condition in which the heart function deteriorates.

Before his first birthday, he was admitted to the National Cerebral and Cardiovascular Center in Osaka, which is equipped with a ventricular assist device. There, a doctor gave his parents the dreaded news: “Without a heart transplant, he cannot be saved.”

Haruki was registered with the Japan Organ Transplant Network, an organization that matches donors to patients, to await a transplant. His parents held out hope upon hearing that it was likely a donor would be found in about three years.

Haruki spent almost all of the time in his hospital room. A mischievous boy, he would hide his toys, and would smile as he called, “Papa!” and “Mama!”

But in the fall of 2021, when he was 2½, he developed septic fever due to bacteria entering his blood. The effects of medication led to the loss of fingers on both hands, and caused hemorrhaging in his lungs. Despite all efforts to stem the disease, he passed away on Dec. 14 that year.

To keep Haruki with him at all times, Fujiwara put a small piece of his son’s bone in a ring that he wears on his right hand.

“If only a donor could have been found …” It’s a thought that haunts him to this day.

Beloved daughter’s legacy

“I hope that even if it’s just a little, the number of suffering children and their families will decrease,” said Daisuke Shiraki, 42, a jujitsu martial arts master who runs a studio in Gifu.

As he talked during an interview in November, Shiraki held a photo of him and his daughter Yuki, before her death at age 4.

From birth, Yuki developed rapidly into an active child, taking lessons in swimming and ballet. But shortly after turning 4, she began to have bouts of vomiting and facial swelling.

Taken to a local hospital, she was diagnosed with idiopathic dilated cardiomyopathy, a serious disease of unknown causes that affects the heart’s ability to pump blood.

Upon consultation with her doctor, Yuki was admitted to Osaka University Hospital in Suita, Osaka Prefecture, which has an extensive record of heart transplants. Her symptoms quickly worsened, and she became only able to occasionally open her eyes and nod in response when spoken to.

The condition made clear that Yuki needed an immediate transplant, but if she waited for a donor to appear in Japan, she would not survive.

Her doctor had connections with a hospital in Texas and asked it to consider accepting her. However, about two months after being admitted to Osaka University Hospital, she suffered a stroke caused by a blood clot during treatment.

Yuki was declared brain dead. “There is nothing we can do except wait for her heart to stop,” the doctor said.

Without hesitation, Shiraki decided to donate Yuki’s organs. He knew that out there somewhere, there were children waiting for transplants. Yuki’s lungs, kidneys and liver would go to these young patients.

“As her name suggests, she was a thoughtful child, so I think she is happy to have been able to help someone,” Shiraki said. The “yu” in Yuki means kind or gentle.

Since her death, Shiraki has given talks about his and his family’s experience at local schools and other public venues.

“I want people to know the importance of organ donations and transplants,” he said.

Low donor percentage

According to the Japan Organ Transplant Network, about 300 to 400 transplants are performed annually in Japan using organs from patients who are brain dead or whose hearts have stopped.

Those numbers pale in comparison with the 15,851 people on the transplant waiting list as of the end of 2022.

Most notable is that in the case of heart transplants, the list includes about 40 patients under age 10, yet there have been only a total of 26 operations performed on this age group in the 11-year span from 2010.

Behind this alarming statistic is that, in addition to a lack of medical facilities able to carry out organ transplants, the reality is that public acceptance of organ donations is not widespread.

According to a Cabinet Office survey conducted in 2021 on 3,000 respondents 18 or older, only 10.2% expressed a willingness to donate their organs.

Given the situation, a number of families are pinning their hopes on transplants overseas.

Aoi Sato, a 1-year-old girl of Toshima Ward, Tokyo, will be taken to the United States next month for the purpose of seeking a heart transplant. Her mother Sayaka, 38, said, “Once she becomes well after the operation, I want to show her the world outside hospitals.”

Aoi was found to have congenital heart disease soon after she was born, and was later diagnosed with severe heart failure. She has already had four operations, and her treatment comes with the risk of cerebral infarction or hemorrhaging. The need for a heart transplant cannot be understated.

The cost of a transplant in the United States amounts to about ¥500 million, taking into account the currently weak yen. In Aoi’s case, the money has been raised through donations.

Her mother currently stays at the hospital in Saitama Prefecture where she takes care of Aoi. That keeps her away from her husband and eldest daughter, who attends preschool.

“If transplants become more readily available in Japan, the burden, including financially, will be lightened on patients and their families,” Sayaka said.

Complying with U.S. rules

Problems with overseas transplants that recently came to light led the Japan Society for Transplantation and four other academic bodies to declare late last month that they will distance themselves from cases in which suspected organ or human trafficking might be involved.

The move was made in response to revelations last August that Japanese nationals who went to a developing nation for kidney transplants may have received organs suspected of being bought from live donors. The operations were arranged by the Intractable Disease Patient Support Association, a Tokyo-based nonprofit organization.

For the United States, the rules regulating heart transplants for children are clear.

“In the United States, transplants for foreign nationals are allowed to the extent that it does not deprive an American citizen of the opportunity to receive one,” said Ryoma Aoyama, 42, chairman of the support group Trio Japan. “Thus the procedures are carried out in accordance with the local rules.”

Aoyama added: “I hope the lack of donors in Japan will be resolved so that people don’t have to travel abroad.”