Help Hiro get a heart transplant
Here is Hiro's story, as told by his parents:
Our son Hiro was born on November 9th, 2014. Immediately after birth, multiple congenital heart defects were discovered and Hiro had to be hospitalized to receive medical treatment at a local hospital. He was eventually diagnosed with dilated cardiomyopathy (enlarged heart), as well as left ventricular non-compaction (a disease which causes a hole in his heart, limiting its ability to pump blood properly). As a result of these conditions, at 2 months old, Hiro was transferred to the University of Tokyo Hospital to undergo surgery to narrow his pulmonary artery, in hopes of trying to reduce the stress on his heart.
Over the following year, we tried to see if his long-term condition could be improved via non-surgical medical treatments, but he kept needing to be hospitalized over and over again due to his poor condition.
Unfortunately, Hiro suffered heart failure again in August 2016, causing his prospects for non-surgical medical treatments to disappear. He then underwent surgery to install a pediatric auxiliary artificial heart (Berlin Heart EXCOR). Although his heart is now connected to the machine via a 2-meter tube that restricts him to the hospital room, it has allowed him to recover some of his mobility and activity.
However, this artificial heart is only a temporary measure. While Hiro is connected to the artificial heart, he is in constant danger of infection or blood clots which could lead to stroke or cerebral hemorrhage. At this point, the only way for Hiro to be able to live a normal life is to receive a heart transplant.
In 2010, Japan’s organ transplant law was revised to legalize organ transplantation for children, but over the past 6 years only 4 heart transplants have taken place. The prospects for Hiro to receive a successful heart transplant within Japan are extremely low. Therefore, in order to save Hiro’s life, we have made the decision to try to bring him to the United States to undergo heart transplant surgery.
Hiro's doctors from Tokyo University hospital have arranged for the Columbia University Medical Center (CUMC) in New York City to take on Hiro's case. Since he is connected to an auxiliary artificial heart, Hiro must be transported to CUMC from Japan via a special medical airplane and will be hospitalized there while waiting for a suitable transplant donor. The total cost for transportation, hospitalization, surgery, and follow-up treatment will exceed 2.5 million US dollars.
In order to save Hiro, we humbly ask for your support and help.
Hajime and Reiko Inamoto
Hajime and Reiko's friends in Japan have started a charity over there on behalf of Hiro, and their website can be viewed here: Save Hiro website
(mainly in Japanese, but also has an English, Korean, and Chinese page)
They began their fundraising efforts on December 22nd, 2016, and they hope to raise the necessary funds by the end of this April. We will continually update this page with the overall fundraising total.
Would you partner with us to help save Hiro?
"Pain, Pain Go Away"
Thank you all for your support for Hiro.
This is the diary to share Hiro’s daily life and his favorite things, in the hopes that you can get to know him more.
Today’s entry is about the disinfection procedure of the auxiliary artificial heart insertion site in Hiro’s abdomen, and the things after.
Disinfection of the insertion site is a part of our daily routine.
It is a procedure that must be performed by a doctor once a day.
In the beginning, Hiro disliked it and cried.
However, recently he can stay still until the procedure finishes.
As a reward, he receives small cotton balls, and he enjoys tearing them into small pieces:)
The thick tube that connects the auxiliary artificial heart to his own heart comes out of his abdomen.
Hiro is starting to move more and more, and that causes some movement of the tube at the insertion site, which has resulted in formulation of granulation tissue there (a sort of bumpy wound tissue).
With the help of local anesthesia, his pain is controlled for a while.
However, Hiro squats down while holding his stomach after moving a lot or late at night.
He might be in pain.
I am not sure what to do since he cannot talk yet.
If he cries too much, I call a nurse.
But other times I will loosen the breast band that hold the insertion site and observe how he does.
The breast band can be too tight at times.
Sometimes, no intervention is needed for his mood to get better, but if I think that he might still be in pain, it makes me hope for Hiro to live his life without this machine even a day faster.
Caution: A graphic photo of a tube inserted into his abdomen is attached below.
Thank you to all who have been supporting Hiro. Please continue to support him in your prayers.
" What makes me happy, what makes me worried"
Today my post is about what makes me happy and worried.
After installment of the artificial auxiliary heart, Hiro started to move around energetically for the first time.
He started to walk with assistance, and recently he is starting to get good at walking by himself.
Currently, he is walking inside his crib back and forth. Before I know it, his tube gets more twisted than a twisty donut!
His tube is about 2 m (6 ft) long, but it can get compressed when it gets twisted.
There are many dangerous risks when the tube gets twisted, such as it cannot send enough oxygen, it gives too much pressure at the insertion site in his abdomen, or the tube can pull through from the machine.
When I think about that, my heart trembles with worry.
But Hiro doesn’t pay attention to my worries and is happily walking.
He can easily walk on a bumpy road.
Hiro is laughing frequently as he walks outside; he must be so happy to be able to be outside now after such a long time stuck in the hospital room.
As he sweats with exertion, Hiro is working hard to practice how to walk.
I heard that an organ transplant requires a lot of stamina, so I hope he can gain as much stamina as possible now to get ready.
Thank you to all who have been supporting Hiro.
It is hard to find words to express my gratitude.
Please continue to support Hiro.
(This is a periodic update from Hiro’s mother)
Thank you all for always supporting us. We are filled with much gratitude.
Thank you also for those who volunteered to raise funds on the street, and for those who donated money.
[How Hiro is doing with rehabilitation recently]
Whenever Hiro goes out of his room, he wears a mask (to protect himself from infections). Sometimes he refuses to wear it, but he does his best to put it on. After the heart transplant, he will have to wear a mask for a while, so if he can get used to it now it will be reassuring to me.
Speaking of rehabilitation, he used to walk with energy and tolerated rehabilitation with an occasional smile. However, recently he cries and refuses to walk, and at times it ends up with me carrying him down the hallway.
He should have want to go outside, but when he goes out of his room, his legs does not move.
From a mother’s prospective, if he can walk it will be more fun for him so I wish he can try a bit more. But maybe I’m asking a bit too much of him right now.
Staying in the bed seems too cramped so I wish he can just walk with all his ability… Perhaps this is a growing process.
I am reminded to take it slow…not in a rush, but in his pace.
Thank you always for your continuous support and prayers.