Savannah's Hearing Loss - Part 1: Diagnosis

I have been wanting to write this particular blog ever since I started it, but because I knew how it would take me to write all the information I have been avoiding it.  Haha.

**Disclaimer: I do not know everything about hearing loss or the diagnosis of hearing loss.  This is just my experience, what I understand, and what I am passing on.  If something doesn't seem factual from what you understand, don't be offended. I am no expert.  :-)

Some of you may know that Savannah has been diagnosed with some hearing loss in both ears.  Here is where I tell you a little bit about our experience finding out.

Savannah after birth

Savannah was born at Swedish in Seattle on Sunday, August 7.  Before we were allowed to check out on the 8th, they ran a series of tests on her.  One of the tests they ran was what they called a "Infant Hearing Screening."  Savannah's brain responses to noises were monitored to determine if she passed this screening.  Well, she didn't.  After doing a little research, I didn't think much about it and was told by the woman who did our testing that she could have fluid in her ears from the birth and that we should come back in two weeks to do the testing again.  So we scheduled the second test for two weeks after her birth and checked out to go home.

After just watching Savannah's behavior, there was no doubt in my mind that Savannah's hearing was perfectly normal.  She startled at sounds (really hating the sound of the toilet flushing).  She seemed to respond to voices (as much as any other 1-2 week old).  Nothing seemed out of the ordinary.  So, I thought nothing about having the second test done.

Well, she failed the second screening when we went back to Swedish.  I didn't really understand what that meant.  What this screening does is tell you if your child's brain is responding to conversational sound.  During Savannah's first screening, she failed on one ear and passed on the other.  During this second screening both ears had failed the test.  They suggested that we do another hearing test, but at Children's this time.  I scheduled the appointment later that afternoon once we had left Swedish.

At this point, I was kind of freaking out.  I didn't really understand exactly what all this meant, but I knew that Savannah could hear me when I was talking to her.  It was frustrating to know that we had to go to another appointment.  Unfortunately, the appointment at Children's was over a month away because that was the next thing they had available.  Four more weeks of waiting.

Randomly while I was coaching the girls HS swim team, one of the girls asked me if she could buy Savannah some head phones as a gift.  I gave her a puzzled look to which she responded, "it gets really loud at the pool, and my mom works with kids that have hearing loss at Children's - I think head phones would be good for her."  I didn't mention anything to my swimmers about the tests, because...well...I didn't know if anything was going on quite yet with her hearing.  I happened to know this particular parent fairly well and it never hit me to give her a call and ask her questions about what we were dealing with.

Needless to say, I called her the next day.  She was able to pull some strings and when someone cancelled she moved our appointment up earlier and personally scheduled us with an audiologist that she worked with.  Instead of waiting four weeks, we were able to get in right away - just a few days after she and I talked.  Lots of positive things have come from my coaching experiences with this particular group of kids and this was definitely one of them.  Being a first time parent was scary enough, but knowing there was someone I knew to help me figure this stuff out was good.  Our friend was more than helpful and explained what we should expect from our appointment and was just a great contact for questions for me.

Savannah had her first EOAE and BAER tests in September.  Children's has a great informational site that explains these tests really well.  Here is the link.  Savannah's first tests lasted about 4 hours.  At the conclusion of the test, they determined that Savannah had hearing loss in both ears.

That was a rough day for me.  I cried...a lot.  I still didn't really understand the diagnosis and what it meant.  Like most people, I am finding out, I thought it meant that Savannah couldn't hear, that she would need to be put in a special schools, that we would need to learn sign language and that my idea of parenting was turned completely upside down.  I called my friend that worked and Children's (she was out of town on business) and she was helpful in letting me know that early detection is more important than anything else we could do for Savannah (not reassuring at the moment, but really great encouragement now that I look back).  This woman not only looked through Savannah's chart, but invited myself, my mom and my grandmother to her house to explain exactly what the hearing loss meant and answer all of my questions and concerns...AFTER HOURS.  What a blessing to us!  She suggested that we come in for another test to confirm the results.  She helped us schedule it for just a few weeks later.  The results of those tests were nearly identical to the first.  Savannah was officially diagnosed with moderate bi-lateral hearing loss at 2 months old.

Most of a child's speech development takes place in the first few years of life.  Speech is developed based on what you hear.  If a child's hearing is not in the normal range, speech skills may not develop normally either.

To help illustrate this, here is an audiogram:

That purple area is commonly called a "speech banana."  It is the level of sound at which those letters are heard at.  To learn to make a sound, you need to first hear it. Savannah's hearing loss puts her at a normal to near normal range through 3000 HZ (following the top of the diagram) and after that her hearing drops off in dbls putting her outside of the "speech banana" and giving her the moderate classification.  Basically, f, s, and th sounds are hard for her to distinguish - which would also make them hard for her to say clearly.

Because Savannah has a lot of what they call "usable" hearing, hearing aids were the best choice to help her.  With her aids, her hearing is in the normal range.  Savannah was fitted for and given hearing aids on November 7 - at exactly 3 months old.

Savannah the day we got her first aids - zebra print!

It is suggested that children be fitted with aids before six months of age for them to really reap the benefit as their speech develops.  We were well above the curve in getting her aids at just 3 months old.  Michael and I went to the appointment together to get her aids not really knowing what to expect when they turned them on.  They warned us that because she does have so much good hearing, that she may not react at all like some other babies do who have cochlear implants or more loss.  Once they put the aids on, Michael said her name and she immediately turned her head around to him.  It was the first time that we had seen her respond to a specific sound's direction.  She had a huge smile on her face.  (After 4+ months of aids now, she still has this same response when her aids get put in every morning.)

To sum up her diagnosis, Savannah is not deaf (or Deaf) (and I am by no means putting down those that are - that is just not Savannah's diagnosis).  You would not classify someone who wears glasses as being blind.  As I explain to the kids that I coach who see Savannah's aids, they are "glasses for her ears."  They help her hear clearly what sounds muffled to her; the same way that glasses help clear things that seem blurry.

We are still unsure as to the cause of Savannah's hearing loss and will start with some testing in May that could help us and others understand more.

While I am sad that Savannah is going to deal with this for the rest of her life, there are a lot of positives things that have happened in spite of all this.  I think we can all agree that we each have something "wrong" with us.  Savannah's thing just happens to be her hearing.  Some parents don't know that their child has any loss until their vocabulary doesn't develop properly and by then you can't go back to do things differently.  She was able to qualify for state funded for her first pair of aids - so we didn't pay one penny!  They are expensive, but the ones she has now are not loaners - they belong to her and will until she outgrows them.  Our biggest issue now is keeping her from pulling them off and putting them in her mouth to chew on!!

Savannah at 6 months with her aids

My next blog update will be soon (I promise), and I will talk about our experiences post-diagnosis.

I am so thankful for the testing that we did initially and also that we had someone close to us guide us through the process as we went.  I have no doubt in my mind that Savannah's speech will not just develop normally, but that she will be telling us all off very, very soon.  :-)

Savannah this past weekend with Michael (no aids).

--Chauntelle