Hearing parents of a profoundly deaf newborn trying to prioritize language access and her future autonomy
Hi everyone. My wife and I are hearing parents, and we have three kids: a 6-year-old, a 3-year-old, and our newborn daughter, Rosie.
Rosie is about one month old and is profoundly deaf. She failed her newborn hearing screens and recently had diagnostic testing that showed no response at very high levels in both ears, with normal middle ear function. We have a repeat ABR scheduled and an ENT appointment coming up. Cochlear implants have already been brought up as a possible future option.
The part we are struggling with is this: we want Rosie to have as much power as possible over that decision when she is old enough to understand it. A cochlear implant feels like a major decision involving her body, her identity, her relationship to sound, and her place in both the Deaf and hearing worlds. As hearing parents, we are trying to be careful not to make that decision from fear, panic, or from the assumption that deafness automatically needs to be “fixed.”
I am a paramedic, so I do respect medicine, evidence, early intervention, and the reality that timing can matter. We are not dismissing medical advice or pretending the research does not exist. At the same time, I am also someone who has broken and exceeded a lot of expectations in my own life, and that shapes how I look at this. I do not want to accidentally limit Rosie because we were scared, because we only listened to one system, or because we assumed the goal had to be making her as close to hearing as possible.
At the same time, we are not trying to be passive. We understand that language deprivation is a real risk, and we do not want Rosie waiting on adults to figure themselves out while her brain is ready for language now.
So our current thinking is: start ASL immediately, make our home language-rich, get our whole family immersed, connect with Deaf adults and Deaf mentors, use Early Intervention, learn what options exist, and make sure Rosie is deeply connected to the world from the beginning. We want ASL to be real in our house, not just a few baby signs. We want her siblings to learn. We want our extended family to learn. We want her to have access to fluent signers and the Deaf community, not just hearing parents trying their best from an app.
We know this may be controversial because cochlear implant timing matters, and we understand there can be tradeoffs if implantation is delayed. We are not anti-CI. We are trying to understand whether it is possible to protect her language development and connection while also preserving her ability to decide about cochlear implants later.
Our goal is not to make Rosie hearing. Our goal is to make sure Rosie has language, identity, family connection, confidence, education, safety, and choices.
So I would really appreciate honest perspectives:
For Deaf adults, especially those raised by hearing parents, what do you wish your parents had understood early?
For people who grew up signing, what helped you feel fully included in your family and the world around you?
For people with cochlear implants, especially those implanted young, do you feel grateful your parents made that decision early, or do you wish you had more say?
For parents who chose ASL-first, CI later, CI early, or no CI, what were the actual tradeoffs?
And most importantly: if hearing parents want to delay or avoid making the CI decision for a baby, what would they need to do to make sure they are not accidentally creating language deprivation while trying to preserve autonomy?
We are new to this, and we know we have a lot to learn. We want to listen carefully, especially to Deaf adults and people who have lived this from the inside.