Organ Donation

NEW UPDATE: 3/31/2015
UPDATED: 3/30/2015



When a little bit of reality set in that night in the ER and my baby wasn't coming back there wasn't even a question whether or not to donate his organs. I wasn't sure if anything could be donated because he had been gone for so long without oxygen and his heart not pumping. I was told that there are still things that can be donated. I can't remember if they had me sign papers there, but I do remember getting a call later that morning from Intermountain Donor Services (IDS). It was such a hard conversation to have because I was talking with someone and giving them permission to harvest my son. To cut into him and take perfect little things out of him. I knew that it was still the best option because if I couldn't have him alive with me then the best thing is to make it so that his organs could save a mother from going through what I am going though. I never thought that I would have to make this decision for one of my children, but yet I never thought I would be planning a funeral or picking out such a tiny casket for one of my children either. I knew that he would have wanted me to make that decision to share his life. Just like I have talked about before, he was the most loving and service oriented little boy I had ever met and he was only 13.5 months old! IDS told me that his heart valves were still good and could be used. It was a good feeling knowing that my boy would live on in another child. I didn't want to think about how that harvesting took place even though I had watched autopsies before. I still don't like to think about how he was cut open. How every little last part of him was examined with his little body cut open on a cold hard metal table. His perfect body was no longer perfect. His perfect little head that I used to kiss, and comb his hair was now cut into. In the back of my mind I know that this happened, but if I start thinking about every last detail and how everything was performed I lose my mind.
So after knowing that he would be able to give life to another little body I figured that I would hear from either IDS or maybe directly from the family or families that benefited from my loss. Over a year passed and I still hadn't heard anything. I finally received a survey in the mail from IDS wanting to know how they did with the whole process. I felt it was a perfect time to let them know that I had never heard about what happened to Corby's valves. A few weeks ago I finally received a call from IDS. I asked if I could know if Corby's valves were used. She told me yes and told me that his pulmonary valve went to a 10 month old baby boy in Nevada and his aortic valve went to a newborn baby boy here in Utah. I asked if she knew how they were doing, and she told me that she doesn't receive even the information of who the recipients are let alone how they were doing. I wish more than anything that I could talk with the parents. To tell them who my baby was that saved their baby's life.
I saw a few stories on the news about children that received hearts and the parents of the deceased child met the recipient child and listened to their heart with a stethoscope. I thought that was tender, but I didn't quite get it. I truly wish I never had to get it. I didn't get the longing to hear something from your child again. That deep pain that, at most times, is so uncontrollable you want to scream in agony. I get it now. I get all of it. I want so bad to be able to meet those little boys and listen to their heart that is working properly because of my son's valves. Those valves that I carefully grew in my body with such love and care. Those valves that were once keeping my son's heart beating and his body alive. I want to watch them play. I want to hug them. I want to tell those parents how much my baby was and is still loved. How much he is missed every second of every day. That part of me will forever live with them.
This is where I need help from the online community. I have contacted a separate part of IDS that I was told could "possibly" help me. I have heard nothing from them. I would like to hope that the mother or father or someone that knows these little boys to come across this post. So please pass this along to help get it to where it needs to go.
As a refresher you can go here or see relevant information below:
Corby passed the night of October 18, 2013. He was not taken to the ER until after midnight so his death certificate says October 19, 2013. His valves were harvested that same morning of October 19, 2013 around 9 or 10 A.M.

UPDATE 3/30/15: UPDATE 3/31/15: I just received a call from someone at IDS. She was kind enough to fill me in on a little more information about how tissue donation works. Corbyn's heart valves weren't transplanted right away. Sometimes tissue doesn't get transplanted until sometimes 2 years later. Corby's valves did get transplanted within that year before I inquired about his valves, but that just means that my search just became much bigger. His valves were not transplanted around the time of his death so these two boys could have gotten them any time in 2014. My biggest problem is that if the recipient or recipient's family doesn't register with the tissue donation place I could write letters until I'm blue in the face and they wouldn't go anywhere, or I have to find them on my own. They have to be registered if I go the traditional route. Tissue donation places aren't on the same track as organ donation places in that there isn't a case worker involved at the hospital to help the recipient in writing a letter if the choose to the donor family. The majority of the tissue donation places do send a packet with the tissue for the surgeon to give to the recipient. Unfortunately the tissue place that Corby's tissues went through does not provide that service at this time. So Corby's recipient's may or may not know to register.  Hopefully that will change in the near future. I hope that Corby made an impact on helping them change. So I am asking two things. One, any family that has been a recipient of tissue donation to please find out which transplant processor your donated tissue went through and register through them. The place that people register for the tissue processor, Cryolife, that handled Corbyn's valves is called Caring to Share. So I beg of you to please register.  Like I stated above usually with organ donation there is a case worker with the recipient that encourages them to write a letter to the donor family. With tissue donation there isn't. I for one don't see why it's not as important since it's a tissue from a deceased person. That tissue is still coming from someone that is no longer living. Why not a case worker? It is still coming from a family that is still aching in so many ways.  Second, please everyone and anyone share this blog. Keep it going until I find my baby's valves. Share it in every avenue you have available to you. I would like to hope that the parent's that have my baby's valves are forever grateful and would like to hear about where those valves came from.
Great news!!! While working with IDS they were able to get in contact with Cryolife and the recipient's family from Nevada have registered. 
I never thought what I would say once I found the recipients. I am overcome with so many emotions. What do I say? How do I tell them how precious my son is to me? How he is and always will be part of me? How their son will forever be blessed and have part of Jesus' right hand man with him? How do I tell them how perfect he was? I feel like there aren't enough words to describe my son to them fully. I want to so bad send them the thousands of pictures and videos I have of Corby to help them get a glimpse of what I am missing out on. I'm not jealous that they get to keep their son. I'm happy that my son was able to give the ultimate gift--life. At time's I'm angry that he isn't here. I'm angry that such a perfect body had to so abruptly leave this earth. I'm angry that I didn't get to fight for him as his mother. I'm angry that I have to live this emotion-filled and raw life now. BUT I am grateful for the technology we have to save lives through tissue and organ donation. If the shoes were reversed I would be forever grateful and indebted to the mother that lost her son and ultimately saved mine. I guess that's what I'm scared of. I'm scared of their emotions towards their donor and family members (us). Are they grateful, or are they just curious and want to just find out about where their son's valve came from? There are "lookie loues" everywhere that are curious more than emotionally attached. I'm scared that is what I am going to get. How will my emotions handle that? How will I handle knowing that my baby was given to someone that doesn't really want to know about him? I'm sure that it will all be fine, but I still worry. Remember how I talked about thinking worst case scenario and then when it turns out better I am pleasantly surprised? I'm believe this is what I'm doing here. Hopefully I'm pleasantly surprise. 
So now that ONE of the TWO recipients have registered I still need to find the other recipient from Utah. So please continue to share this to help families register so that IDS can match them with us and other donors or for the family to find me through here. Thank you!