Lucy was born in 2020 at home with a planned homebirth. She’s my fourth baby and 3rd home birth. All of my births were fairly uneventful- no intervention needed for any of them. I was an older mom, 41 at her birth but very healthy and without cause for any concern. The birth went perfectly and she was born 11 days early.
We were not concerned at all about Lucy’s hearing. We have no family history of hearing loss except for some distant relatives and I was positive she could hear. She failed all of her tests and I was still not at all worried that something was wrong. I had seen her startle to a phone call near her head – not even considering that she FELT it, not heard it. Looking back, she always moved her eyebrows around as a baby which we thought was hilarious – but I’m sure that she was just imitating us moving our faces around talking to her.
When we finally made it to the audiologist, she was 3 months old and they told me that she had moderately severe loss in one ear and severe in the other. But she was not sedated, just sleeping and she was starting to wake a few times, so I assumed it could be an error and it’s probably not that bad. They referred us to Early On and another audiologist for hearing aids. I worried as I knew practically nothing about hearing loss. I researched and worried, hoping they’d made a mistake.
Lucy was fitted for her hearing aids and was wearing them by the time she was 4 ½ months old. I again was so uneducated on all of this. Now that she had these hearing aids, for sure she could hear us. But when we got her final test, they told us that she was profoundly deaf – nothing registered on their test at all.
With the help of Early On, I slowly began learning more and more about hearing loss and deafness and slowly began learning American Sign Language (ASL). They have been an invaluable resource of information and help. They referred me to U of M for another hearing test, this time a booth test. While being conducted, I had to wear earplugs because it was so loud. She barely reacted to a couple sounds and nothing to the others. That was my wake up call to how deaf she really is.
We were unsure of cochlear implants, but they told us if we want her to speak, it will be necessary. We then met with a surgeon and started the process despite being uneasy making that decision, and when we got her imaging results, I was relieved to find there was no decision to be made. Her cochlea’s (and vestibular) were not developed, in addition to a few anatomical abnormalities that would make the implants not effective. That is when we truly embraced her Deafness. Honestly I am sad to say it took that long, and I was so relieved to find out there was no treatment that we needed to do, just learn ASL which we were already in the process of doing.
My husband and I both research everything, and are constantly trying to learn everything we can about ASL, the Deaf community and what Lucy’s options are. We started meeting up with a local Deaf social group that welcomed us so warmly, and we found a Deaf mentor that teaches us weekly ASL lessons.
I owe so much gratitude to our midwife for doing the test. If she hadn’t, who knows how long it would have taken to figure out that Lucy was Deaf due to my lack of knowledge about deafness and my resistance to actually believing she could be deaf. But, because we found out early, Lucy is at her age level for communication. She is a thriving, happy little girl with a world of possibilities ahead of her.