Hearing Loss: Amy’s Story
"I'm honored to share my family's experience with hearing loss. I am the mother of twins, David and Elyssa, who were born extremely early. One of the consequences of their prematurity is that both my children have permanent hearing loss.
"Emotionally, it was like being knocked back to right after their birth at 24 weeks. It was just so unfair! They had already been through so much! And this was entirely different than anything they had been through up to this point—this was permanent, not something that they would eventually outgrow.
"And while hearing loss is actually a disability I am familiar with, since my Dad is hard of hearing, I still could literally feel the track of my life shift beneath me after hearing that news. I knew in that moment that wherever I thought my life was going before, I was now headed someplace entirely different.
"We learned about the all-important 'speech-language acquisition window' and began to research cochlear implants. At the same time, I also began to learn sign language. Our goal was to give our children access to language in as many forms as possible. As much as possible, we wanted to put off forcing them into any path that would narrow their options. Don't misunderstand, I do want my children to be able to hear and speak so that they are not isolated from the larger culture we live in. I also felt though, that it was not entirely up to me… our children should have input into the decision of how they would communicate, too.
"As our preemies continued to grow and develop, we started to notice that they were hearing more than their tests would have predicted. The hearing tests showed that David's hearing had improved—in some ranges to a moderate hearing loss level—A miracle! Elyssa however, still tested as profoundly deaf.
"The time had finally come to get Elyssa a cochlear implant. It wasn't easy to go through for any of us but we are so glad that we did! Elyssa has done fabulous with her "cochlear elephant" as she called it at first, quickly catching up to where she was with her hearing aids and then surpassing that point. She had a hearing test at one year post-activation. I cannot describe the feeling of joy and pride I felt, sitting behind my "deaf" daughter, watching her respond to sounds I could barely hear. For David, hearing loss is not his major issue anymore, although it is still there. We certainly are in a different place than I expected six years ago, but it is also most definitely a good place."
CDC would like to thank Amy and The Rhode Island Assessment Program for sharing this personal story.
Is Your Child "At Risk" for Hearing Loss?
If you check one or more of the boxes below, your child may be at risk for hearing loss.
- My child spent 5 days or more in the NICU or had complications while in the NICU (check with your child's health care professional to find out).
- My child needed a special procedure (blood transfusion) to treat bad jaundice (hyperbilirubinemia).
- My child was exposed to an infection before birth.
- My child's head, face, or ears are shaped or formed in a different way than usual.
- My child has a condition (neurological disorder) that is associated with hearing loss (check with your child's health care professional to find out).
- My child had an infection around the brain and spinal cord called meningitis.
- My child received a bad injury to the head that required a hospital stay.
- My child was given certain medications, like cancer chemotherapy or other medications that might hurt hearing (check with your child's health care professional to find out).
- You are worried about your child's hearing for any reason.
If you checked one or more of the boxes above, your child may be at risk for hearing loss.
- Ask your child's primary health care provider for information and help.
- Ask if they can help you get an "authorization" or "referral" to see an audiologist for a hearing test.
About Our Work
CDC's National Center on Birth Defects and Developmental Disabilities is committed to hearing loss tracking, national data collection, and health education. Our goal is to help children reach their full potential.
Tracking Hearing Loss in Children
CDC has been tracking the number of children with hearing loss since the early 1980's. This information helps us look for potential risk factors for hearing loss and helps health departments, service providers and early intervention programs to estimate case loads, plan for services, and advocate for needed resources.
Promoting & Tracking Early Screening, Diagnosis, and Intervention
When a child's hearing loss is identified soon after birth, families and professionals can make sure the child gets timely follow-up testing and intervention services at an early age. This will help the child develop communication and language skills that will last a lifetime. CDC's Early Hearing Detection and Intervention (EHDI) Program works with states and territories to ensure that infants are screened for hearing loss no later than one month of age, infants who do not pass the screening for hearing loss get a full hearing evaluation no later than 3 months of age, and infants with a hearing loss receive intervention services no later than 6 months of age.
Preventing Hearing Loss
CDC works to understand more about the risk factors that can increase the chance that a child will have hearing loss. This information is helpful in educating people about ways to help prevent hearing loss in children.
- A Parent’s Guide to Hearing Loss
- Hearing Loss in Children
- Information for Families
- Hearing Loss Research & Tracking
- Developmental Milestones for Children
- CDC's National Center on Birth Defects and Developmental Disabilities
CDC works 24/7 saving lives and protecting people from health threats to have a more secure nation. A US federal agency, CDC helps make the healthy choice the easy choice by putting science and prevention into action. CDC works to help people live longer, healthier and more productive lives.
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