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Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.
Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."
Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!
An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."
"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."
Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!
An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."
"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Story by Angela Stephen-Dewhurst
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