Today, more parents are learning that their children have hearing loss earlier than ever before. According to the NIH, about 2 to 3 children of every 1,000 in the United States are born with detectable hearing loss in one or both ears. And more than 90 percent of those cases are born to hearing parents.
For parents like us, who have children born with profound hearing loss, here is what you can expect that first year once they fail their initial hearing screen at the hospital:
Genetic testing: Because Yan and I are both Jewish of Ashkenazi descent, we did a Counysl prenatal screen when I was about 10 weeks pregnant. At the time, it was an annoying inconvenience, but in retrospect, it was the most important test of my life. The test confirmed before Sonya was even born that Yan and I were both carriers of a non-syndromic hearing loss gene (meaning no other symptoms aside from hearing loss) called Connexin 26. It was devastating news to receive while pregnant (I discuss receiving the call from our doctor here), but it gave us the information we needed to move forward quickly once Sonya was born and had failed her hearing screen.
In addition to us taking the Counsyl test, Sonya also received genetic testing when she was 14 days old to confirm the cause of hearing loss. This was not an easy time to say the least, but I am grateful we accomplished it so early.
Auditory Brainstem Response (ABR): A more sophisticated way to diagnose hearing loss conducted by an audiologist. For an infant, this is a long – but painless test – which measures the reaction of your child’s auditory nerves to sound. It is safe and it does not hurt your child. For babies younger than six months, it is done while he or she naps. Sonya did an ABR test twice when she was about two weeks old.
At this point, Sonya was diagnosed as deaf. We received loner hearing aids immediately from NYU.
Evaluations to determine candidacy for Early Intervention and the Deaf Infant Program: Soon after Sonya failed her ABR, I contacted Early Intervention. The Early Intervention is a state-sponsored program that supports families from birth to three who have disabilities or developmental delays. The first step is for the child to be evaluated. A case worker came to our apartment and asked us basic questions, and at that point determined Sonya would be a candidate for EI services.
The next step took place at the Center for Hearing and Communication in Manhattan. We made the schlep downtown (the first of many) and had her evaluated by speech therapists and audiologists. The process took a few days, but ultimately, it was decided that she was also eligible for the Deaf Infant Program, a privately funded program that provides speech therapy services (and transportation to and from a speech therapy center) for children with profound hearing loss in New York.
Lots and lots of speech therapy: Sonya started speech therapy through Early Intervention and the Deaf Infant Program at three months. This included two to three 60 minute individual speech therapy sessions a week and a group therapy session. She also received her own pair of hearing aids through Early Intervention.
Evaluations to determine candidacy for cochlear implants: At four months, we took Sonya to NYU’s Cochlear Implant Center where a team of audiologists and speech pathologists determined after numerous tests and evaluations that Sonya would be a good candidate for cochlear implants. We also met with Dr. Tom Roland, the surgeon, around that time – who gave us a bit more information about what the surgical process.
MRI: While all other evaluations pointed to cochlear implants as having the greatest benefit for Sonya, Dr. Roland required an MRI to be conducted to ensure the anatomy of Sonya’s ears were suitable for the devices. It’s never easy to put your baby under anesthesia, but after two failed attempts at CT Scans, I was game. The MRI gave the doctor a detailed view of Sonya’s ears, and it gave us a glimpse at what the surgery day would be like as it took place at the same hospital and prepped us for what it would be like for Sonya to go under anesthetic.
A few days later, Sonya was cleared for the surgery. We scheduled it for when she was seven months old.
Choosing a device: Many families struggle with the decision as to which device is best for their child. Between Advanced Bionics, Cochlear and MED-EL, the choice is not always clear. We opted for Cochlear because the internal component was the smallest and the newest at the time (2015). That said, I know many families who went with Advanced Bionics and have been very happy with their choice. Ultimately, all of the companies have great reviews and there is no research I am aware of that shows one device has better hearing results than the other.
In addition to the brand, you will also need to choose the color of the processor and coil. Parents usually go by hair color. We went by skin color because Sonya had no hair at the time.
The surgery: See my post on Sonya’s cochlear implant surgery here.
Activation: Two to three weeks after the surgery, the cochlear implants will be activated. This is the first time your child will hear. Check out my post on Sonya’s activation here – which includes videos of the actual activation of the devices.
As you can see, the timeline is not easy. But then, THEN!! you will have a little one who hears! I am tearing up watching this old video of Sonya who couldn’t yet speak at less than a year, but definitely could hear!
And before you know it, a couple years have passed and she is talking on par or ahead of her hearing peers. Thanks speech therapy!