Hello! My name’s Liz. I live with my husband, Zach, two chubby cats, and a disgruntled pughuahua.
I decided to start blogging after Zach and I lost our newborn son, Owen, to a form of skeletal dysplasia (also sometimes known as dwarfism). We weren’t sure until he was born if he was affected with a lethal condition, so we also prepared to have a medically complex baby if he was able to come home. During my pregnancy, I read a TON of medical journals, as Owen’s condition was super rare. I also read a lot of blogs about baby loss, poor prenatal diagnosis, and dwarfism. These were a lifeline and comfort through a very difficult time. I hope chronicling Owen’s life and death, and our recovery will offer peace and healing to other mothers going through this experience.
I found very few blogs detailing Owen’s specific form of skeletal dysplasia, short rib polydactyly syndrome. If you’re here because your baby has been given a similar diagnosis, it may be helpful to read the CaringBridge I kept when I was pregnant, as it shares many of Owen’s measurements and details of my pregnancy with him. I’m also a nurse, and I spent the first year or so of my nursing career in the NICU, so I drew quite a bit on that experience as I crafted our birth plan and details of interventions we wanted for Owen.