Fell through the cracks

We were living in Missouri when my children were born.  Mandatory newborn screens just came into law a year or two prior to my oldest daughter's birth.  My oldest daughter failed her newborn hearing screen on one ear, but due to her delivery she had severe bruising and swelling in her face.  Our pediatrician wasn't concerned at the time due to all the fluid our baby had in her ear, but the pediatrician had us retest her hearing.  Everytime she got retested, we got conflicting results (left ear pass, right ear fail and then next test opposite results).   Also, ear probes would always fall out during testing and never fit properly.  Coincidentally, she always ended up with ear infections within a day or two of testing so it was difficult to conclude anything from the tests.  At 3 months of age, an ENT (NOT pediatric specialized, to our mistake) diagnosed her with profound deafness.  Again, within a few days, she had bilateral ear infections at which time our pediatrician also pulled out huge chunks of ear wax, missed by the ENT.  She obviously could hear our voices and would look to us when we called her name so we knew she was not "deaf".  Our pediatrician advised we wait until she was older to get retested.  She developed language skills, but family and friends had a diffcult time understanding her.  With a second daughter, 12 1/2 months younger now learning to talk and repeating the same misenunciations of my oldest, we privately paid for speech therapy, as she did not qualify for First Steps.  The speech therapist, knowing her history, recommended we start retesting now that she was 2 years of age.  Again, tests were hinting at an impairment but she was not old enough to fully cooperate for a complete test.  This time we saw a pediatric ENT who felt that our daughter was making too many gains in speech therapy and advised us to again, wait and see.  Since that time, she passed every hearing screen given to her.  We questionned it at times, but dismissed it as childhood selective hearing... she didn't hear any worse than her younger sister did.  Last year (2007-2008 school year), my oldest got strep throat 6x.   We were now living in Wisconsin and saw a pediatric ENT in MIlwaukee.  He immediately had her hearing tested, due to her history.  I think he thought he would just dismiss it and put my fears to ease.  To everyone's surprise, my daughter was diagnosed with mild to moderate bilateral sensorineuro hearing loss.  She was given aids at a cost of $3500.  Teachers and other professionals were amazed at the diagnosis because she was doing so well in school.  With speech therapy on and off through out her life, she had taught herself how to lip read and fooled all of us.  She has adjusted to her hearing aids and is doing beautifully...  classmates think they are cool and some have even asked their parents if they could get some!

Since we now had a child with a hearing impairment, everyone in the family had to be tested.  Again, to our surprise, our second daughter also was diagnosed with mild to moderate sensorineuro hearing loss.  Everyone was in disbelief as she had passed EVERY single hearing screen ever given to her, even the newborn test.  Hindsight, we always said our oldest didn't hear that much worse than our middle child.  We never thought that if the oldest needed aids, the middle one did too.  Ironically, her curve is identical to that of her sister's, only a 5 dB shift better.  Both tested negative to connexion 26.  Another $3500 later, both girls have their hearing aids and are doing extremely well.  Both received FM systems through the school and are progressing well, especially with reading, writing and math.

Our insurance obviously did not cover hearing aids.  To make matters worse, we had just moved from Missouri and had not sold our house down there.  With two house payments, we had to find a way to purchase the hearing aids.  What do you do when it comes to your children... you find a way to help them and provide them with whatever they need!!!!

We are truly blessed that with despite late diagnoses and reecipt of hearing aids, both girls have adjusted well and are performing phenomenly well in school.  The hearing impaired teacher and educational audiologist are amazed at how well the girls have taught themselves to compensate.  We have had great luck in the school district we live in to have fantastic support to the girls.  Their friends are very accepting, and so far, have really not had any "negative" impact from the hearing aids, other than the expense.

Knowing the widespread lack of insurance coverage, I began networking in April 2007 to help with the grassroots effort.  God has blessed my husband and me with two girls who, thankfully and luckily, have overcome odds and are achieving academically well.  I want to ensure that that remains for the future.  I want to help other families achieve the success that we have had this past year.  No child should go without hearing because of expense.

- Vicki Denzin