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
Tag: OI baby
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)
October is Dwarfism Awareness Month
"I think he has a form of Dwarfism." This was the moment it all started getting blurry for me. During our follow up ultrasound, at 20 weeks pregnant, our doctor said these words to us. Shock, confusion, curiosity and denial flooded waves over us. I wondered how anyone could tell with such certainty that this… Continue reading October is Dwarfism Awareness Month
Diagnosis during pregnancy 