Ann

Linda B., a registered donor tells us.....

     My husband and I donated our daughter's organs to research. I would like to tell you the story of how we came to that decision and about the actual donation itself.

     Our daughter, Ivy, was born with Hurler's Syndrome-- a fatal genetic disease that affects every cell, every organ in the body. We discovered Ivy had Hurler's at seven months of age. Ivy developed mentally and physically to the level of a 2-1/2 year old. We had the privilege of having a 2 year old for 6-1/2 years. How wonderful that was! By the time Ivy was four years old, she required round-the-clock nursing care, was oxygen dependent, blind, stopped walking, lost muscle tone, had limited vocabulary, was on heart and respiratory medication, breathing treatments and antibiotics. What a mouthful, and how grim it all sounds. On the positive side, she still had her hearing and her smile, Ivy loved life, and we loved her. She loved to laugh and sing. When she couldn't remember the words, she laughed at herself. Ivy was the queen in our house, and we were her loyal subjects. We were determined to give her the best quality of life for as long as we could. We decided early on in her disease to have Ivy die at home. Our pediatrician and nurses supported us in our decision.

     When Ivy was about four years old, I began thinking how it would be for me when Ivy died. We decided on cremation for Ivy. I personally felt the need to think and act on the details of he death before she died. I needed to be able to have it all thought out. I went about the process of imagining the details of what needed to be done after she died. I spent days looking for the perfect urn, a beautiful pale blue urn, and I found a little white wicker chair to place the urn in, and some lovely rose-scented candles that I imagined would surround her chair and urn. I made arrangements to borrow a very large photograph of Ivy that hung in the teacher's lounge of her developmental center. So I had these things put away and it meant a lot that I had done this. I no longer had to think about it, and I moved on to the next step in my process. It was as if I had been divinely guided. I kept thinking that it was a shame that Ivy couldn't be an organ donor. My husband and I are organ donors and I would have felt such peace and happiness if Ivy could have helped another live. What an honor it would be do do that.

     I discovered a way that Ivy could help research and perhaps one day help save another child's life if a cure could be found. I read about a brain and tissue bank in Maryland that was looking for donors. I called them and began asking questions about the process and what it entailed. Everyone I spoke with was very kind and compassionate. It required a bit of organizing and a great deal to think about, because to donate one's body to research, let alone my beautiful Ivy's body, was quite a big deal. I began to imagine Ivy's spirit all around the United States in research centers helping to solve the mysteries of this awful disease. It took a great deal of courage on my part to set this up. We could change our mind at the last minute, should our courage fail us upon her death. I say this because an autopsy needed to be performed to collect Ivy's organs very soon after death. I knew that this would be difficult for me, but God was guiding me in the process and I trusted Him completely. He would not give me the opportunity if He felt that I would change my mind. I also knew He would not pass judgment on me if I did. So when Ivy passed away peacefully in the arms of her mother and father at home, we did, indeed, proceed with the organ donation.

     I would like to tell you a little about that process and how it was for me. In order to harvest the organs, you are allowed only a few hours with your child, because the organs deteriorate quickly. We all spent our time with Ivy and said our good-byes in our own way. Our courageous nurse made the appropriate calls to the doctor, tissue bank, and the pathologist who would be performing the autopsy donation. The doctor came to our home, pronounced her dead and signed the appropriate documents.

     We gently cut some curls from Ivy's hair for remembrance and carefully wrapped her in her favorite blanket and drove her ourselves to the hospital for the donation. You know, it was really helpful for me to carry my dead baby around in my arms. My husband and I took turns. It seemed to help. People kept wanting to take her from us, but we insisted that we carry her room to room until it was truly time to let her go. After the donation, we carried her home and made arrangements to take her to the crematorium. Once again, it was suggested that they would collect her for us. We wanted to do it ourselves. I held her in my arms one more time as we drove all together to the crematorium. When we got there, we gently placed her in their care and finally said our loving good-byes. I can't tell you how empowering it felt to do that ourselves.

     She came from my body and never left my side until her cremation. I needed to do it and I just wanted to tell you about it. I now imagine the spirit of my angel busy at work around the country in research labs, trying to find a cure for this disease. I pray each night that she will succeed.

     So, if anyone reading this is interested in donating your child's organs, I encourage you to do so. It has been three years since her death, and my husband and I continue to believe we did the right thing for our family.


Linda B., a registered donor tells us.....
My husband and I donated our daughter's organs to research. I would like to tell you the story of how we came to that decision and about the actual donation itself. Our daughter, Ivy, was born with Hurler's Syndrome-- a fatal genetic disease that affects every cell, every organ in the body. We discovered Ivy had Hurler's at seven months of age. Ivy developed mentally and physically to the level of a 2-1/2 year old. We had the privilege of having a 2 year old for 6-1/2 years. How wonderful that was! By the time Ivy was four years old, she required round-the-clock nursing care, was oxygen dependent, blind, stopped walking, lost muscle tone, had limited vocabulary, was on heart and respiratory medication, breathing treatments and antibiotics. What a mouthful, and how grim it all sounds. On the positive side, she still had her hearing and her smile, Ivy loved life, and we loved her. She loved to laugh and sing. When she couldn't remember the words, she laughed at herself. Ivy was the queen in our house, and we were her loyal subjects. We were determined to give her the best quality of life for as long as we could. We decided early on in her disease to have Ivy die at home. Our pediatrician and nurses supported us in our decision.
When Ivy was about four years old, I began thinking how it would be for me when Ivy died. We decided on cremation for Ivy. I personally felt the need to think and act on the details of he death before she died. I needed to be able to have it all thought out. I went about the process of imagining the details of what needed to be done after she died. I spent days looking for the perfect urn, a beautiful pale blue urn, and I found a little white wicker chair to place the urn in, and some lovely rose-scented candles that I imagined would surround her chair and urn. I made arrangements to borrow a very large photograph of Ivy that hung in the teacher's lounge of her developmental center. So I had these things put away and it meant a lot that I had done this. I no longer had to think about it, and I moved on to the next step in my process. It was as if I had been divinely guided. I kept thinking that it was a shame that Ivy couldn't be an organ donor. My husband and I are organ donors and I would have felt such peace and happiness if Ivy could have helped another live. What an honor it would be do do that. I discovered a way that Ivy could help research and perhaps one day help save another child's life if a cure could be found. I read about a brain and tissue bank in Maryland that was looking for donors. I called them and began asking questions about the process and what it entailed. Everyone I spoke with was very kind and compassionate. It required a bit of organizing and a great deal to think about, because to donate one's body to research, let alone my beautiful Ivy's body, was quite a big deal. I began to imagine Ivy's spirit all around the United States in research centers helping to solve the mysteries of this awful disease. It took a great deal of courage on my part to set this up. We could change our mind at the last minute, should our courage fail us upon her death. I say this because an autopsy needed to be performed to collect Ivy's organs very soon after death. I knew that this would be difficult for me, but God was guiding me in the process and I trusted Him completely. He would not give me the opportunity if He felt that I would change my mind. I also knew He would not pass judgment on me if I did. So when Ivy passed away peacefully in the arms of her mother and father at home, we did, indeed, proceed with the organ donation. I would like to tell you a little about that process and how it was for me. In order to harvest the organs, you are allowed only a few hours with your child, because the organs deteriorate quickly. We all spent our time with Ivy and said our good-byes in our own way. Our courageous nurse made the appropriate calls to the doctor, tissue bank, and the pathologist who would be performing the autopsy donation. The doctor came to our home, pronounced her dead and signed the appropriate documents. We gently cut some curls from Ivy's hair for remembrance and carefully wrapped her in her favorite blanket and drove her ourselves to the hospital for the donation. You know, it was really helpful for me to carry my dead baby around in my arms. My husband and I took turns. It seemed to help. People kept wanting to take her from us, but we insisted that we carry her room to room until it was truly time to let her go. After the donation, we carried her home and made arrangements to take her to the crematorium. Once again, it was suggested that they would collect her for us. We wanted to do it ourselves. I held her in my arms one more time as we drove all together to the crematorium. When we got there, we gently placed her in their care and finally said our loving good-byes. I can't tell you how empowering it felt to do that ourselves. She came from my body and never left my side until her cremation. I needed to do it and I just wanted to tell you about it. I now imagine the spirit of my angel busy at work around the country in research labs, trying to find a cure for this disease. I pray each night that she will succeed. So, if anyone reading this is interested in donating your child's organs, I encourage you to do so. It has been three years since her death, and my husband and I continue to believe we did the right thing for our family.