About a week after we found out about Stella's diagnosis, Jordec and I discussed the idea of donating her organs. I can't remember who thought of it first but we both agreed that we would love to do it but we didn't know what was going to happen, so we were reluctant to say anything definite. I did some research and it turns out that there is a lot of controversy about babies with Anencephaly donating organs. Apparently, in order to donate you have to be declared brain dead, but how to you declare a baby brain dead when they don't have a brain? There is fear that the babies will be seen as nothing more than donors and it is for sure a gray area in the ethics department. We decided to talk to our doctor about our wishes to donate her organs. The doctor was surprised but they contacted the right people and put us in contact with them too. The doctor received an email from Nebraska Organ Recovery Service (NORS) stating that with Stella's condition, she would be eligible to donate her liver, and, if she was over 8 lbs, to donate her heart valves. I talked with the man who would be doing the operation on Stella multiple times before she was born. He was amazing and wanted to make sure that we had all of the information before we made our final decision and that we could voice any questions and concerns that we may have. He even gave me his home number in case we thought of something else to ask about. We decided that we would donate her organs but we reserved the right to change our minds. We didn't know what we would be feeling and what the situation would be after she was born, so we wanted to leave ourselves the option. NORS was understanding of that decision and they were ready for us if we chose to donate that day. We felt that Stella could maybe live on in others or at least help in research to develop ways to help others.
On the day Stella was born, she was not 8 lbs so she would not be donating her heart valves. After she passed, we were comfortable donating her liver so we notified NORS, who was waiting in the hospital, and they got the OR ready for her. We had some time before the operation so we took a lot of pictures and spent more time with her. It was hard to let her go but I knew she would be coming back in a few hours. We rested and visited with family while she was gone. I was so happy to see her come back to us. I had missed her! I remember feeling proud of her for donating her liver and thinking that she was so brave. Those thoughts may seem irrational but I still feel that way. I am proud of my little girl doing her part in some big medical advancements. NORS gave us little teddy bears with a ribbon around them that says "HERO". We received multiple bears and gave them out to the grandparents. I agree that Stella is a hero. We also received many pins with their logo on that we handed out to Stella's Aunts and Uncles. I really can't stress enough how amazing NORS was to us. Please go to their website and put your name in their donor registry if you are an organ donor.
We found out later that the kind of liver donation she had was only second one done in Nebraska. It is such a new procedure that, unfortunately, her liver didn't directly affect someone but it will indirectly affect many, many lives to come. They found out through Stella that they needed to use an addition medicine to make the donated liver work better. I don't know the specifics as it is a confusing process for me but because of Stella, they are one step closer to figuring it out. They are also froze her liver cells for the possibility of future developments where they could use them. The great thing is, if they ever use her cells, we will be notified! I think that is awesome. We received a medal in the mail from NORS a while back and, when we get her headstone figured out, it will be put onto it.
Now, Jordec and I are running a 1/2 marathon in May to honor Stella. As a side note, any donations we receive are going to be donated to NORS. They truly are an amazing organization. God bless!
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