Below is the story submitted by PA MomsRising member Jill Cammarata
My son Anthony was born with profound bilateral sensorineural hearing loss—which means he has been completely deaf from birth—in 2014. I had a totally healthy pregnancy and natural delivery, and by all accounts Anthony was a healthy, thriving 8-pound child. There was no history of hearing loss in either my nor my husband's family, so it was a complete shock to us when he failed his newborn hearing screen. We were told this was normal and could be fluid in his ear so I went back for several more hearing screenings. I had read books to my pregnant belly and sang to him in his infant car seat and thought there was no way my child wasn't hearing me. But he wasn't. We later learned that the cause was genetic.
I spent the rest of my maternity leave shuttling Anthony to doctor's appointments and getting him fitted with teeny tiny hearing aids that did nothing for him but were required by insurance in order for him to qualify for the miracle of cochlear implant surgery. The day after Anthony's first birthday, I was a ball of nerves as he underwent that surgery, which everyone told us would be life changing. Three weeks later, we turned on his new "ears" for the first time. He did not have what they call "a YouTube moment"—instead, he screamed and cried.
For the past two years, we've worked with therapists, audiologists, and speech pathologists to help Anthony use his new ears and access language. I've watched his peers and children younger than him at daycare learn to talk without any effort at all, but right now Anthony is almost 3 and has only a handful of spoken words and signs. Communication is my livelihood but I struggle every day to achieve it with my own child.
Cochlear implant surgery has been a miracle for us, even if Anthony's progress is slow. He loves nursery rhymes like the Itsy Bitsy Spider, and dances at every opportunity. I have faith that surgery will allow him to live and function in the hearing world of his peers, and go to a mainstream elementary school one day.
Cochlear implant surgery is one of the most effective treatments for hearing loss, but it also happens to be one of the most expensive. Anthony's surgery cost thousands of dollars, and his continued therapy and appointments and equipment are all more than what I expect to pay for my other child's first year of college. Having Medicaid has been a life- and sanity saver. When you have a child with a disability, every day is a bit overwhelming without having to worry about how to budget for it all. I never thought I would need to rely on Medicaid but I am so, so glad it is there for me and for Anthony.
One in 3,000 children has hearing loss, and I am terrified by the possibility that new legislation will strip Medicaid from Anthony and other kids like him, and force their parents to make impossible choices about their health and access to a hearing world. I've met so many children like my son and they all deserve a chance to hear and be heard. I only hope our government officials will listen.