Denali’s Story

As told by her mother, Stacey

I have always been a big supporter of organ donation. When I received my very first driver’s license, I proudly checked the organ donor box. I made sure that my family knew that I was an organ donor and questioned them about their wishes for their own organs. So, when my unborn daughter was diagnosed with anencephaly, one of the first questions that I asked was if she would be able to donate her organs. I texted my doctor that night. She immediately contacted Donate Life. To my surprise, we were told that my daughter would not be a candidate for donation because of the nature of her condition. This did not sit well with me. At every ultrasound, I asked about Denali’s organs and were told that they were perfect.  I felt as though I was working very hard to grow her organs and it seemed to be such as waste that they would go largely unused when they could save the life of another baby.

After doing some research and talking with others, I learned that Denali was a candidate for tissue donation, including her eyes and her perfect heart valves. Denali was also a candidate for whole body donation and organ donation for research. I decided that I would pursue donating Denali’s body to the medical school that I attended. However, because I was now living in Alaska, it was determined it would be too difficult to get her body back to the East Coast. My husband and I discussed it and decided that we wanted to donate Denali’s heart valves, eyes, and kidneys for transplant.

Shortly before Denali was born, we were informed that for Denali to be a donor, she would have to stay in the hospital’s morgue where her tissues would be procured. My husband and I had felt all along that we did not want Denali to be placed in the morgue. We talked about it and we decided that we were uncomfortable with donating Denali’s tissues under those circumstances.

Denali was born on Dec. 27, 2013 and lived for three incredible days. She was beautiful and perfect and the most amazing person I have ever met. During a long night at the hospital, I held my perfect, pink baby and could not imagine giving her over to have her tissues procured. But then she died. I’d like to say that I was holding her when she died, but I was not. My husband held her while I went to the restroom. When I came out, she was dead. It was so apparent. At that moment, I was filled with a profound sense of peace and knowledge that Denali had completed her earthly work. Her body was present, but her spirit was not there. John and I washed and dressed her body to go to the funeral home. While my mother-in-law and I were finishing the preparations, a nurse handed John a phone. I overheard him saying that we were not interested in tissue donation. I leapt across the room and told him that I wanted to reconsider. We spent the next hour on the phone with a chaplain from Donate Life, Lori, asking her many questions. I wanted to know exactly what was to happen to my baby and who would be doing the procedure. I told her that I didn’t want anyone “gawking” at my baby. She assured me that Denali’s body would be handled with the utmost care and compassion and I believed her. We made arrangements for the funeral home to contact Lori and coordinate the tissue procurement. Handing my baby over to the man from the funeral home was one of the hardest things I’ve ever done. We left the hospital with our families and Lori called us again to get our medical history. We decided to get pizza and we sat in the parking lot of the restaurant giving detailed medical histories. During that time, I was thinking about my sweetheart’s body and what was happening to it.

The next day, Lori called to say that the procedure had been a success and Denali’s heart valves were in perfect condition for transplant. At that moment, I was bursting with pride for my sweet girl. Ultimately, only her heart valves had been procured because Denali had an infection when she died.  A few days later, the hospital where Denali had been born held a flag raising ceremony in honor of Denali’s gift. Her flag flew over the hospital for five days.

No parent should ever watch their baby die. Four months after Denali left, I look forward to the day when I’m notified that her heart valves have been transplanted. The last gift that my beautiful, sweet girl gave to us and to the world will be saving other parents from the experience of losing their child. It will be my proudest moment as a parent.

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