cochlear implant, deafness/hearing loss, Parenting

I know it’s not doing me any good to go back and relive the “whys” and “whens” and “ifs,” but I’m doing it anyway and what I just found breaks my heart.

Nov. 5, 2001 … She wasn’t even a month old yet and we’d taken her for a follow-up hearing test because she failed the newborn test. I wrote in my calendar that year “Riley has to have another hearing test.”

“Riley has to have another hearing test.”

“Riley has to have another hearing test.”

What the … ? Why didn’t we get another one? Did we ever even think about it again? Oh my Lord. What have we done? Why did we wait? I truly don’t remember the hospital nurses telling us to get another test – I remember them telling us it was probably nothing and not to worry. Or maybe that was my way of coping after we did get the diagnosis, shifting the blame elsewhere? Because it’s just too painful to think I could’ve caused Riley to wait needlessly.

We could’ve known and got her treatment so early, instead of letting her go 18 months without hearing a sound. Eighteen months!!! She could’ve been fitted for hearing aids then and had her first cochlear implant surgery at 9-12 months. She wouldn’t have lost over a year of language input! My baby … I’m so, so sorry. How could I have forgotten another hearing test? How?

A week later she had a check-up with her pediatrician, who declared, “She’s doing great.”

And she was, except she couldn’t hear.

I write this not to make anyone feel sorry for us – most anyone would be angry with us for being so stupid and naive. I’m angry at myself. But I’m writing this for anyone else who is in the same situation.

If your baby fails a hearing screening twice, MAKE AN AUDIOLOGIST APPOINTMENT IMMEDIATELY! Don’t wait. You’ll either find that your baby is OK, or you’ll be able to start treatment sooner and your baby will have a much better, much easier time learning to communicate with spoken language.

I haven’t told anyone else about this, but I wanted to share it here in case anyone needed some prodding to make the appointment.

Keep listening …

One Small Voice from Tiffani on Vimeo.

0 thoughts on “Heartsick

  1. Tiffani,Blogs are cathartic for this very reason…and everything happens for a reason. If your situation went to 18 months it’s so someone reading this blog and your many responsible news stories does not go through the same experience you went through…you are obviously an exceptional person with great heart who has totally dedicated herself to becoming informed and advocating for Riley. Let go of the guilt, the pediatrician could have realized something, it isn’t so easy to recognize hearing loss for new parents, especially when the child is alert and responsive to stimuli based on using the other senses. Hugs…Jodi

  2. I agree with Jodi, let it go. Parents do the best they can. It is the hardest job in the world.I took Jenna when she was just a week old to the audiologist for a test. She passed her newborn screening, but even with my deafness from rhemeutic fever I wanted her checked. Then I continued to have her checked yearly until I felt comfortable with the test. She has normal hearing. I agree, if you newborn fails the newborn hearing screening, make an appointment fast. I also suggest using a major hostipal audiologist not just the neighborhood audie. It is important to have someone who is trained to work with newborns.Valerie

  3. Tiffani, I’ll be honest here too…I tell people all the time “Thank God for those tiny deformed ears Gage was born with!” He was born deaf also but I would most likely have not taken him in for a follow up test until much later. I was specifically told that malformations externally usually mean problems internally as well. This is THE ONLY REASON I took him back. He smiled, he looked at us, he cooed, I thought he startled but the tightening or squeezing of the eyes together while he slept as a door slammed shut didn’t count. He was only slightly disturbed due to the vibrations. He was my first kid so I just didn’t know. These little guys can fool you. Don’t beat yourself up but keep doing what you are doing…educationg those new mamas like you me.

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