As everyone who has followed this blog at all knows, my daughter is a heart transplant recipient. It still seems strange to say that, even though it has been 3/4 of a year since she received it. It just seems like such a foreign concept. Although I often heard of organ donation in the news and even from family and friends, I had never known anyone personally who had had one. And although I have always had the little pink sticker on my driver's license (that used to indicate organ donation - it now is directly on the new licenses), I had never really thought much about organ donation and the impact that every donor can make on the world. April is "Donate Life Month" so I wanted to remind all those who read this blog to consider becoming an organ donor and to make sure that if you make the decision to become an organ donor, to let those around you know! The first reason is to make sure your wishes are known, the second is to spread the word and get those who have not considered organ donation to think about it and make a decision for themselves.
In case you have not read Bean's story, I will take this chance to share some pertinent details, as well as some related statistics. Bean ended up at Lucille Packard Children's Hospital after being at two other hospitals, with a diagnosis of Idiopathic Dilated Cardiomyopathy. Although some children with this diagnosis can be treated for years and years with drugs, Bean was one of the approximate 33% who end up needing a heart transplant to survive. Because she was in the hospital, on a ventilator, she was listed as a 1A status with the United Network for Organ Sharing database. We were told at the time that we should expect a long wait and that she may need a "bridging device" in order to survive the long wait. A Berlin Heart was ordered for her and was kept on site in case her heart took a turn for the worse while waiting. One thing you soon learn when waiting for a transplant is that there is no "usual" - each story is different. But, the doctors and social workers still supply you with statistics in the hopes of giving you some idea of the range of possibilities. According to Science Daily, up to 40% of infants die while waiting for a donor heart and the average wait is two months, although new attempts at using ABO-incompatible hearts are showing promise in decreasing both those numbers. Because Bean was a preemie, she was extremely small (under seven pounds at the time she entered the hospital) and she also had the hardest blood type to match, so we were told that average of two months may stretch out to six months and even a year. We settled in at Stanford to wait. But, shockingly, a heart came in less than 30 days. On July 6, 2009 we received word there was a heart that was compatible and had been examined by the transplant team and found to be a good candidate for Bean. The surgery would wait until July 7, because other organs were also being donated and the heart is the last organ to be taken for donation. I don't know how many other babies were helped and maybe even saved by these donations, but it still amazes me that some parent was able to see through what must have been crushing grief to think about others who could be saved by their tragedy. I am so thankful for that decision.
Organ donation is a gift that gives exponentially. Obviously, Bean was saved by organ donation, but the effect of that is felt and known by a myriad of people and will be felt for years and years to come. According to UNOS data, today there are 106,937 people waiting for transplants and since January of 2010, only 2,198 transplants have been performed. Consider the impact you can have by becoming a donor.
Please feel free to use Bean's story to spread the word about the benefits of organ donation and if anyone out there reading would like me to share Bean's story with an organization, on a website or anywhere else to help raise awareness, please feel free to email me. I am in the process of becoming an Organ Donation Ambassador, but would love to share our story in any capacity.
I would also like to say to all the donors and donor families out there that I thank you. I thank you for thinking of others and impacting others in a way that few others are able. I would like to say that you are not only saving lives, but you are changing lives for many, many years to come with your gifts. Thank you, thank you, thank you.