What Does a Deaf-Blind Diagnosis Look Like?

Shortly after Casey was born, while we were still in the NICU, we were told that Casey failed her hearing screen, but that many babies fail this test. They went on to tell us that they will be doing additional testing and that we should not worry about anything just yet. They performed an additional Auditory Brainstem Response(ABR) test to fully measure Casey hearing. After this test we were told that Casey was in fact deaf and had moderate hearing loss in both ears.

The doctors told us that Casey would possibly stop making sounds as she aged. Doctors said that she could not hear external sounds, but also that she could not hear her own sounds. We were told we should expect her to stop trying to make sounds all together. When I was told she was deaf I understood she wouldn’t hear me, but it never occurred to me that I would not hear her. Until the doctors explained that she could not hear her own sounds either the diagnosis didn’t really sink in.

hearingaidsThe good news was that doctors said with brain injuries, Casey’s primary diagnosis, that they have seen many patient improve with time. Since she was not completely deaf, but moderately deaf, they said that hearing aids may help as well. I soon learned that hearing aids are not considered medically necessary, and therefore are not covered by insurance. I know, WHAT?! I later found out that with medicaid, and medicaid waivers, you can get them covered usually. It’s standard insurance that will not typically cover them. I called every day for weeks and fought with the insurance company and filled appeal after appeal. Somehow, I did eventually get them covered but it was a lot of work.

We did not see much improvement with Casey’s hearing when she wore the hearing aids. Over time we kind of gave up and stopped putting them on. They just seemed to make her mad anyway.

opticnerveNear Casey’s first birthday she had her vision tested. This led to multiple retests and soon after it resulted in a diagnosis of Cortical Visual Impairment (CVI). We were told that Casey was legally blind. Doctors explained the CVI diagnosis as Casey’s eyes work fine, they were healthy. It was the wiring that transmitted what her eyes saw to her brain that is the problem. In addition, the brain injury from birth also damaged Casey’s optic nerves. She is not able to blink or close her eyes. When she falls asleep her brain stops sending the “open” message to her eyes, but the “blink” or “close” message is never sent/received. When Casey is asleep her eyes are less open than when she is awake, but they are never fully shut. This leads to dryness and severe light sensitivity in addition to the CVI.

At the time, we were still in Los Angeles and through the Early Intervention Services we were receiving already for PT and OT, we added vision services. Doctors hoped that with vision exercises and hard work that Casey could retrain her brain to interpret what her eyes were seeing. We were told the wires would always be crossed, but that it was possible that she could learn to work around it.

glassesCasey started seeing a low vision specialist and got her first pair of glasses. The glasses were more to protect her eyes than to improve her vision though. They did have a slight adjustment, but they worried that trying to correct her vision too much may actually cause headaches and make her less willing to work on her own to strength her eyes.

We were so focused on dealing with each of her diagnosis individually, that it never crossed our minds that Casey’s combination of diagnoses was actually it’s own diagnosis, deaf-blind. It wasn’t until around Casey’s third birthday that we switched over to the school system and started getting vision services through a state program in Texas when our case manager referred us to the deaf-blind specialists. Of course then it made perfect sense, but we never thought about it that way before.

caseynowCasey is now 9 years old, and her vision and hearing have both improved a lot over the years. Her sounds increased with time. She loves music and movies. She responds to sights and sounds in her environment. However, when she is out of her comfort zone her brain tends to get a little excited and we notice it is much harder, or even impossible, for her to hear and see in those settings. She still is not able to pass hearing and vision tests, and we still have the diagnoses of moderate hearing loss in both ears, CVI, legally blind and deaf-blind. For us, it has actually kind of been a good thing. With these diagnoses there have been some services and equipment that Casey needed over the years that we would not have been able to get (at least not easily) without these diagnoses. Casey is completely dependent on us for all aspects of life. I am sure if she was walking and more independent these diagnoses would be a much bigger challenge for us.

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