Stella’s Story

As told by her mother, Bridget

We found out in Spring 2011 that our daughter Stella had anencephaly. We were heartbroken but tried to figure out a way that her short life would have an impact on others. I asked my doctor about organ donation and at first they said that it was not going to be a possibility. I then talked with the hospital and the NICU staff and while they didn’t know the put me in touch with the Nebraska Organ Recovery System (NORS). I called and talked with a man named Tom about our possibilities. He informed me of our options and was amazing. He was so respectful and took time to explain all of my many questions. He calmed my fears and assured us that we could change our mind at any time without a problem. Knowing that our beautiful daughter could help save another baby renewed some hope.

We carried Stella to term and had a scheduled C-section on July 29, 2011. She was beautiful and lived for 2 amazing hours. We were informed that the donation team was there but that they would stay out of our way until we were ready for them. Stella was under 8 pounds so the only option we had was for her to donate her liver cells. This type of donation was so new that Stella was only the second baby in Nebraska to have it done. They needed to take Stella within one hour of her passing. One of my concerns was that they would have to take her from us right after she passed. It was comforting to have that special time with her first. The nurse took Stella for her surgery and we had her back a few hours later to spend more time with her. I remember feeling so proud of her for donating part of herself. Tom from NORS came in and talked with us about the surgery, gave us some amazing bears with a ribbon that said ‘Hero’ on them and some donation pins to give to the family, and promised that he would inform us personally about the outcome of Stella’s liver.

I don’t remember how long it took for NORS to let us know about her liver, weeks I would guess, but they did. We were informed that because the type of donation she had, that Stella’s liver cells were unable to be used in another baby, or babies. They did say that they were able to use them for research and that because of Stella they now know of an additional process to make it easier for the next donation. We were also told that if they learned anything new or did anything else with her liver cells we would be informed. This year we were invited to attend a gathering of donor family members put on by NORS called a Symphony of Life. I am looking forward to seeing the beautiful tribute to the donors and hearing their stories. Every year on the anniversary of Stella’s birth/death, we host a fun run with free will donations for NORS.


Stella’s Story — 2 Comments

  1. What a beautiful story…what an amazing gift. Thank you for sharing and bringing hope and awareness to others.

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