Thank you for sharing your family's story. As parents of a daughter who also had trisomy 18, your words perfectly described our experience with her. Our daughter, too, was diagnosed after birth and additionally had a severe heart defect. Plans for heart surgery were cancelled upon her diagnosis of trisomy 18. We were encouraged to take her home on hospice as we were advised that she likely had days to live. As medical professionals ourselves, we trusted Julia's medical team and their certainty in their predicted course of her diagnoses. Julia had other plans, and she showed strength and determination as she learned to eat and began to grow. She required a great deal of care, but we were able to provide care at home with minimal medical intervention (she remained ineligible for heart surgery). With her smiles and her engaging eyes, she gave us so much joy and hope that we never expected when given her diagnosis. She lived just over one year, and we are thankful for every moment we had with her. She was and is a very beloved member of our family and our community. She was so much more than a statistic or a diagnosis; she was a daughter, a sister, a neighbor, a person.
Jennychildress.blogspot.com
Competing interests:
No competing interests
13 May 2015
Jennifer W Childress
Doctor of Pharmacy, Trisomy 18 Advocate and Parent
Rapid Response:
Re: Never say never about our child
Thank you for sharing your family's story. As parents of a daughter who also had trisomy 18, your words perfectly described our experience with her. Our daughter, too, was diagnosed after birth and additionally had a severe heart defect. Plans for heart surgery were cancelled upon her diagnosis of trisomy 18. We were encouraged to take her home on hospice as we were advised that she likely had days to live. As medical professionals ourselves, we trusted Julia's medical team and their certainty in their predicted course of her diagnoses. Julia had other plans, and she showed strength and determination as she learned to eat and began to grow. She required a great deal of care, but we were able to provide care at home with minimal medical intervention (she remained ineligible for heart surgery). With her smiles and her engaging eyes, she gave us so much joy and hope that we never expected when given her diagnosis. She lived just over one year, and we are thankful for every moment we had with her. She was and is a very beloved member of our family and our community. She was so much more than a statistic or a diagnosis; she was a daughter, a sister, a neighbor, a person.
Jennychildress.blogspot.com
Competing interests: No competing interests