Everyone knows all children are unique and different--no one child is like another. We found out about a month ago that one of the things that will make Emily unique is that she was born with some hearing problems. While this will present some special challenges for her, we are learning more and more about it every day and will be doing all we can to provide the very best for her.
All newborn babies receive a hearing screening test before leaving the hospital after they are born. Emily failed this test on multiple occassions both before she was discharged after birth and again when we returned 2 weeks after she was born. During these screening tests, her hearing passed in each ear individually and almost passed both ears together (100% in one ear and 90% in the other) on one occassion. But in order to officially pass, both ears must screen at 100% together. We'd seen her startle and respond to sounds so there was no doubt in our minds that Emily
was hearing.
The protocol after failing the newborn hearing screen is to do a more thorough test controlled by an audiologist called an ABR--auditory brainstem response. With this test, tiny ear phones were placed in Emily's ears and electrodes were placed on her head. The electrodes measure the brainstem response to the sounds played by the audiologist. With this test, the audiologist can control how loud to make the sounds so you can specifically see how loud a sound has to be before it elicits a response in the brain. Because we'd seen Emily respond to sound and because she'd come so close to passing her newborn hearing screens, we were surprised to learn that Emily did have some hearing loss indicated on her ABR test.
Since the initial test, we've seen an ENT and had the ABR repeated again for confirmation. Emily does have hearing loss. Her loss is considered a bilateral mild-moderate sensorineural hearing loss. What in the world does that mean? A sensorineural loss is one that originates within the structures of the inner ear or nerves that transmit sound. We aren't sure exactly what the cause of Emily's loss is--her outer and middle ear are normal and the inner ear cannot be visualized without a CT scan. Becuase this would require sedation, we'll hold off on that test for a while as knowing the cause won't really change our treatment plans for her at this point. This type of loss is considered permanent. Loss is categorized as mild, moderate, severe, or profound based on the degree of decibel loss. Her's is mild-moderate which means she does hear, just not as well as she should. In fact, hearing is tested at multiple frequencies (or pitches) of sound. And in lower frequencies, Emily's hearing is normal. It's the higher frequencies where she experiences loss--this means it's only certain sounds that she can't hear well.
So what does this mean for Emily? The recommendation with her type of loss is to get hearing aids and to receive Early Intervention services soon. The biggest concern with children that have some type of hearing loss is that it will impact their ability to learn speech. You need to be able to hear clearly, to distinguish word sounds in order to be able to learn how to make these sounds correctly and develop normal speech. With Emily's type of loss she'll have trouble hearing softer, higher pitched sounds such as those made with s, t, th, f, k, etc. This would affect her ability to learn to make those sounds, therefore it's recommended that she have amplification (hearing aids) so she can hear those sounds correctly. She'll likely need hearing aids for the rest of her life. But with amplification and early intervention we expect her to develop normal speech and language skills.
We've already been referred to Early Childhood Intervention and have our plan in place with them to receive services for Emily. We'll meet with a speech therapist once a month and an auditory specialist four times per month. All these visits will take place in our home (thank goodness!). The therapists will help us make sure Emily stays on track developmentally, will give us strategies for helping us work with her as she begins to develop communication skills, and most importantly (at least at this moment) will help us navigate the process for getting her hearing aids.
I'll be honest--the last month has been pretty overwhelming at times. Lots of new information, LOTS of medical appointments--all on top of adjusting to life with a newborn. You never want to hear the news that there is a problem with your child. This is not what we would have chosen for Emily. But this is not an insurmountable problem. This is not a life and death problem. So far, Emily appears to be in perfect health in every other way. We are VERY lucky that there are screening tests in place that identified Emily's loss so early. And to think, at the time I was just annoyed at having to return to the hospital for additional testing. Now looking back, I'm SO thankful that she did fail that last test by just the tiniest bit so that we were able to be referred and discover her loss now. Years ago, cases like Emily's likely wouldn't be discovered until age 2-3 years when a child continued to have trouble speaking. We are fortunate enough to know about it now. She'll have hearing aids before she even starts to distinguish word sounds so that she'll have every opportunity a child with normal hearing would have and should be able to stay on track in terms of developing normal speech and language. In fact, she won't even know a life without hearing aids so we may be able to avoid struggles over getting her to wear them.
We still have quite the journey ahead of us. We obviously have a lot to learn--both about her loss and about how to provide the best for her whether that's hearing aids, therapies, or special classes as she gets older. We'll also be doing some futher testing to make sure she doesn't have problems with other body systems. Since so many body structures form quickly at the same time during fetal development, whenever you have a congenital problem with one system, it's important to check out other systems. Ears and kidneys develop at the same time, so with Emily we'll be doing some urine and renal tests. We'll also keep a close eye on her vision since children with hearing problems are at increased risk for vision problems also.
We are thankful that we have been very supported by the team of specialists with Early Childhood Intervention and though we're just getting to know them, we feel like they are really going to help us on this journey. And I'm thankful that we have a great pediatrician who will talk through the various steps with me in terms of medical testing--he respects my thoughts and opinions and will help us make the best decisions for her.
We trust God completely in this. He has always be faithful to us. He will continue to be faithful. Emily is loved by her creator and was fearfully and wonderfully made by Him. Our prayer is that through this, His name will be glorified. That years from now we will look back on this and see how He provided for us and for Emily and we will tell of the great things He has done in her life. We trust that He will guide Mike and I as we make decisions for her future. We appreciate your prayers for Emily and for our family.
