Mara's Story
Mara was born with moderate to profound hearing loss. She failed her newborn screening at the hospital but we were assured that this was relatively common and usually just from too much fluid in the baby's ears from delivery. The first few weeks having a newborn baby were a blur but the wait for her follow up testing still seemed to drag on forever. When Mara was 3 weeks old, she had a test called an ABR and we learned about her hearing loss. Although it was a year ago, I still vividly remember my world crashing down around me as I heard the audiologist utter those words, with Bejan on speakerphone in the parking lot because of covid visitor policies, and crying but unable to blow my nose with my mask on. As already overwhelmed new parents, we had no idea what this would mean for Mara and her future. We were scared for her and what this could mean for her life. If I could go back in time, I would give that terrified mama a hug and tell her everything will be okay.
This new world was scary and so foreign to us. There were so many opinions and so many options and so many unknowns. The amount of resources thrust upon us was overwhelming at first but we are so thankful for all the options we have and for the amazing hearing technologies that exist. Mara's care team (multiple audiologists, ENTs, early intervention teachers, geneticists, deaf mentor and now her Northern Voices teachers) have all been phenomenal at helping us navigate this new world and supporting every decision we've made.
She got hearing aids at 7 weeks old, but it wasn't until about 5 months old that we really saw her start responding to sounds. A few months later, we could tell she was actually understanding some words so hooray, the hearing aids were helping. But the questions we kept asking were, how well are they helping her hear and are they helping her enough to understand and develop speech skills? Speech development is such a slow process even in normal hearing kiddos that there really is no magic immediate answer to that question. We had her evaluated for cochlear implant (CI) candidacy and it turns out she was a very borderline candidate. After reading some papers and discussing likely outcomes for kids with Mara's loss comparing hearing aids to cochlear implants, we decided to get her a CI in her slightly worse ear and keep the hearing aid in the other. Mara is considered bimodal using the two different hearing technologies.
Mara had surgery on March 24th, just before her first birthday. She did amazing and has been making wonderful speech strides in the last few weeks since her CI was activated. We are so excited for her and can't wait for the new adventure of Northern Voices where she can continue to develop her speech skills with the amazing, dedicated staff trained specifically to work with deaf and hard of hearing kids. The confidence and self-advocacy skills she will learn at this school will be invaluable. Having a community of other parents to lean on will be invaluable for us as parents as well; navigating this crazy new journey by ourselves during a pandemic has tested our limits to say the least.
Mara has shown us amazing strength and is taking whatever life throws her with a smile and a little dance. We are so thankful for her spunk and ability to show us that a hearing loss diagnosis is no big deal and she will thrive no matter what. Excited to see you conquer the world little girl.
Please consider donating to Northern Voices. The money goes towards student scholarships and program funding. Thank you!