The Story of Lilah – by her mom, Jenn

During my 20 weeks appointment with my 2nd child, Lilah, an abnormality was discovered on her ultrasound. From that day forward our world was flipped upside down. Lilah was born with congenital CMV which stole her hearing. We received the official news about a month into her life that she had bilateral sensorineural hearing loss.

Although we were told prior to Lilah being born that hearing loss was likely, it didn’t make the news any less gut wrenching. I will never forget the day she had her ABR test and the audiologist came in to tell us the news. After the words “Lilah’s hearing loss is so severe she can only hear a jet engine or the like and hearing aids will not provide her access to sound and speech” my brain turned to mush, the room went silent and the rest of the day was a blur.

Fast forward to today, 2 years later, I am in a much better place of acceptance. Lilah received bilateral cochlear implants around her first birthday and we are thankful everyday for the access to sound the implants provide her. Lilah faces additional complications resulting from CMV including brain damage and developmental delays, but if you met her you would never know the list of challenges she faces everyday. She is a happy, independent, determined warrior who makes us proud every day.

Having a child with hearing loss is hard, there is no sugar coating that. While family and friends have been nothing but supportive, they don’t fully understand the challenges Lilah and our family face every day.

I am forever grateful for the “hearing loss momma’s” who have guided me along the way and been my support system. I feel so lucky to be a lifetime member of the hearing loss community and I have met some of the kindest, most supportive women who I never knew I needed in my life.