This summer I gave a virtual lecture for University of Pittsburgh students in the School of Health and Rehabilitation Sciences PA program - section on genetics. This presentation addresses my personal experiences, pre and post natal, as well as the use of lethal language as it relates to inaccurate information and directive care. Call it… Continue reading Lecture for University of Pittsburgh students on parent experience related to prenatal diagnosis
Tag: baby with osteogenesis imperfecta
Osteogenesis Imperfecta: New Diagnosis Toolkit
I'm proud to have partnered with the OI Foundation in presenting this document for families and medical providers. new-diagnosis-toolkitDownload "Congratulations on your new baby and welcome to the OI family! The Osteogenesis Imperfecta Foundation is pleased to offer Newly Diagnosed:A Tool Kit for Parents to help you navigate the many questions you may haveduring this… Continue reading Osteogenesis Imperfecta: New Diagnosis Toolkit
Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
With the expansion of prenatal genetic testing, must come the expansion of dialogue as it relates to the ethical ramifications of prenatal diagnosis. I am not a medical professional, nor a genetic specialist. I am the parent of a child with Osteogenesis Imperfecta (OI), a rare genetic condition. I am a woman and patient… Continue reading Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
Protected: Born Fragile Yet Strong: The Story of Our Son Niko Gian Francis Part 2
There is no excerpt because this is a protected post.
Protected: Born Fragile Yet Strong: The Story of Our Son Part 1
There is no excerpt because this is a protected post.
Diagnosis during pregnancy 