Ethan failed his Newborn
Hearing Screening in both ears. We were told to call with Mass Eye
and Ear within a few days to schedule a follow up exam. None of the
staff, including the pediatrician, made a big deal that he had failed the
screening. Many explained that is was probably due to fluid in the
ears, as the test was performed the same day he was
born.
DIAGNOSIS
I initially scheduled the follow up hearing test at Mass Eye and Ear for 2 weeks later. I then received a call back from an audiologist there, explaining they would like to see him sooner, as he failed both ears. “Wow”, I thought to myself, “they sure are making a big deal of this.”
We
went into Mass Eye and Ear for the follow up test on January 3, 2002. Ethan was 9 days old. I had no idea what we were in
for. I kind of thought they
would re-do the newborn hearing screening. I had Yancy and Emma drop Ethan
and I off, as they went to run errands.
They
told me they would be performing an Auditory Brainstem Response (ABR)
test. This test would be
conducted for as long a time as Ethan remained sleeping. The test took about 2 hours. I remained in the room with Ethan
for the majority of the time, noticing several people coming in to review
the test with the audiologist that was performing the test. I thought to myself, “I wonder if
it is normal to have all these other people come in while this test is
being performed.”
Upon
completion of the test, I mentioned to the audiologist that I was
surprised that all of this time and effort was begin taken to re-check
Ethan’s hearing. That is how
oblivious I was. He mentioned
that they typically wouldn’t perform this test unless they truly think
there is a need. He went on
the say, “Unfortunately, the results are not what you want to hear.” (No
pun was intended I’m sure.)
He
asked if I wanted to call my husband in. Little did I realize, Yancy was
not around (running errands) and our 2 ½ year old was with him. I managed to track Yancy down, and
he brought Emma with him, but in the mean time, I received the news about
Ethan…just my little angel in my arms and me. Ethan had bi-lateral sensorineural
hearing loss: Moderate loss
in the left ear, profound loss in the right ear. Hearing aid(s) would be
required. I thought to
myself, “Hearing aids, this is my baby, my perfect baby. Why would he need hearing
aids?” They felt very confident in the
test results:
ABR – January 3, 2002
.
This
wonderful audiologist, Todd Sauter, delivered this devastating news. He really felt our pain I think,
as he had a son a few weeks older than Ethan. He cared, which at this time
really made a difference. I
could see the tears in his eyes as he told me. He offered options, “Take the
weekend to digest this”, or “Let’s make the ear molds today”. We chose to digest this, although
at the time it didn’t seem possible.
Five hours after we arrived, we left the hospital, our lives
changed. ETHAN GETS HIS
HEARING AID
The following week (and a million thoughts later) we returned to get Ethan fitted for a hearing aid, ear mold impression made, and talk about our next steps. My mom, Grandma Mary, was able to come to this appointment with us. She came over from NY as soon as we told her the news about Ethan.
Todd Sauter fit Ethan with a tiny hearing aid for his better ear, the left ear. Ethan had his first of many earmold impressions made. We met Cheryl Bakey, Speech and Language Pathologist, who gave us a packet of information and explained a few next steps.
When Ethan was 3 weeks old, he received his hearing aid. By this time, I think we were able to be optimistic and we were looking at the bright side of things; the brightest side being that if this is the worst of it, it’s going to be fine. This is our special, wonderful little guy, who is going to be with us for a very long time. We can overcome this.
We
brought Ethan home, and knew that things were going to be fine. We were going to bond with our new
baby, who was still perfect to us, and enjoy our first few months with
him. NEXT STEPS: APPOINTMENTS AND
TESTS
Over
the next few months, Ethan developed beautifully, like any other
baby. We had several
additional appointments however: DOCTORS
Dr.
Leila Mankarious, Otolaryngologist (ENT), Mass Eye and Ear, April
10, 2002 ENT examined Ethan for
abnormalities or related syndromes –
ENT report
. Nothing found,
thank goodness! Additional
tests ordered.
Dr.
David Walton, Ophthalmologist, Boston, MA, May 2,
2002 E xamined Ethan’s eyes for any abnormalities – Eye exam report . Nothing found. TESTS
ABR,
Mass Eye and Ear, March 18, 2002 We
started going to the Stoneham, MA office for audiology services, so we
began seeing a new audiologist in that office, Ellen Zagajeski. She performed this ABR. Ethan was sedated. The results showed that Ethan’s hearing
remained stable, with no progression –
ABR – March 18, 2002
.
What a relief!
Blood Tests,
Mass Eye and Ear, April 18, 2002: Torch Connexin
26 Connexin
30
CT Scan of Temporal Bone,
Mass Eye and Ear, May 15, 2002 Ethan
was supposed to be sedated for this, as the child must be extremely
still. We brought him in so
tired, that I was able to rock him right to sleep, put him on the bed, and
he had the CT Scan without sedation.
It took only a few seconds. Results showed nothing
abnormal -
CT Scan results
. The only
uncertain finding was a prominence of the aperture of the left
aqueduct. They didn’t know
what to make of this.
Behavioral Hearing Test,
Mass Eye and Ear Stoneham, June 11, 2002 Ellen
Zagajeski thought it might be a little early to do a behavioral hearing
test with Ethan (5 ½ months old), but we gave it a try. No conclusive results. TOO EARLY!!!
Speech and Language Evaluation,
Mass Eye and Ear Stoneham, July 23, 2002 Cheryl
Bakey, Speech and Language Pathologist, was to evaluate Ethan routinely
every 6 months. This was the
first evaluation –
Speech and Language Evaluation
.
Behavioral Hearing Test,
Mass Eye and Ear Stoneham, August 6, 2002 This
was our 2nd attempt at a behavioral hearing test with
Ethan. Ellen Zagajeski felt
pretty confident in the results.
Ethan’s
threshold appeared to remain the same as the threshold obtained in the ABR
that was performed in March –
Behavioral Hearing Test Results - August 6,
2002
. Cheerios kept Ethan’s attention
throughout this test!
COMMUNICATION APPROACH
This one of the toughest choices I have ever had to make. Choosing a communication appropach for Ethan was equivalent to choosing a college and major for my baby to pursue in 18 years. To sum this process up, I read Choices in Deafness: A Parents' Guide to Communication Options, by Sue Schwartz, and I talked to as many people in this field as I could find. I met with a Deaf Educator, two Auditory-Verbal therapists, two Speech and Language pathologists, and several parents of deaf and hard of hearing children.
We felt that we wanted Ethan to be able to communicate to the best of his ability; I'm sure every parent of a hard of hearing child feels this way. Instinctively, we wanted to give him every mode of communication, to allow him to ultimately choose what works best for him. However, we also realized that these first two years were so critical for language development, we thought it might be best to focus solely on hearing and speaking, and then take it from there. Of course, I didn't want to look back and regret the choice we made either. In the end, our family decided that an Auditory-Oral approach was best for our family to pursue for the time being. Once that tough decision was made, we were able to enroll Ethan in therapy at the age of 5.5 months, at Soundworks for Children, in Topsfield, MA, with a wonderful woman named Jane Driscoll.
We had been involved with Early Intervention since Ethan was 3 months old. A deaf educator came to the house every week. This was most helpful for me, as I learned how to "play" with Ethan. Many of the exercises were things that parents would naturally do with their baby. I of course did not have the confidence in myself, and felt as though I needed someone to teach me how to interact with my hearing impaired child. She was also able to really educate me on child development, specifically as it relates to hearing impaired children. We continue to meet with Susan on a regular basis, in addition to Ethan's Auditory-Verbal therapy.
SUPPORT
SYSTEM
I feel extraordinarily lucky for so many reasons. First, Yancy and I have extremely understanding and supportive parents. Although geographically we're not right next door to each other, we see them often and keep in constant communication with them. Our siblings and friends, although busy with their own lives, are also extremely caring and willing to help us out in any way possible.
In addition to family and friends though, I am quite amazed at the others I have found for support. As I mentioned previously, Jane Driscoll is Ethan's Auditory-Verbal "teacher". I would also refer to her as an angel, as she provides such invaluable consultation and advice. She teaches Ethan in the most fabulous and caring way, and she outlines a network for the parents to pursue if they so choose. She has been there and will continue to be there for us, supporting us in every aspect of Ethan's development. I hear she is the guru of IEPs (Individual Education Plans), when we have to encounter the public school system.
Of course Early Intervention has been extremely supportive as well. I will expand on this later...
The most powerful support however, I feel comes from being able to share and learn of new experiences from others in our same situation. I have found this through a website called www.Listen-Up.org. A component of this site is a list-serv, that is an e-mail discussion group of parents of deaf and hard of hearing children. The web-site creator and members of this list-serv share their wealth of knowledge and experiences in such a wonderful way. Knowing that this group is there, is knowing that we are not alone in this journey.
SECOND OPINION
As you can see, we are extremely fortunate, as we are located near what I think is the medical Mecca of the world. All of the doctors we encountered were extraordinarily knowledgeable. I was also so pleased with the audiologists that Ethan had. I can honestly say we have not had one negative experience with any of the institutions or professionals we have worked with. To this point however, the only question that I kept asking and encountering was whether or not Ethan was aided appropriately. Should he have only one hearing aid, or should he have two? My goal was to obtain a second opinion, outside of Mass Eye and Ear, by the time Ethan was one year old. Everything and everyone pointed me in the direction of Boston Children’s Hospital.
I called Children’s Hospital at the end of July. The first appointment I had was with a Speech and Language Pathologist, Kristen Karmon. She interviewed us, learned Ethan’s history, and pointed us toward the audiology department to set up an appointment with them – BCDC Evaluation, August 2, 2002.
Children’s Audiology wanted to do another ABR on Ethan. We went to Boston Children’s Hospital on November 5, 2002 for a sedated ABR. Ethan was 10 ¼ months old. The audiologist’s name was Eric Cahill. He was new to the audiology department within the year.
Yancy and I both went, leaving Emma with my sister-in-law. Ethan was very tired when he got there. He was examined briefly by an Otolarygologist named Dr. Roberson, was sedated, and then fell fast asleep. Yancy stayed in the room with Ethan and I stayed on the other side with Eric Cahill as he performed the test. I was interested in how the test was actually performed, and thought I might be able to interpret a tiny bit of the results he was getting.
Ethan slept soundly for two hours. Eric tested both ears quite extensively. What I was able to interpret, I was not happy with, as I noticed Eric started testing Ethan’s left ear at 70 dB, and only went up from there. Ethan’s left ear was his “good” ear, and had a previous threshold of 55 dB. What was Eric doing??? I quietly asked Eric, “Ethan’s left ear has gotten worse, hasn’t it?”, and he replied “Yes, it has.” I slowly prepared myself for the “news”.
In addition to the ABR, Eric brought in another audiologist to do an ASSR (Automated Steady State Response) test. From what I understand, this test is slightly more accurate than the ABR as it can get more precise results. The ASSR was done in both ears.
Upon completion of the tests, I woke my little guy up, and held him so tight. Eric broke the news to us. Ethan’s hearing in his left ear had gotten worse and is now worse than his right ear. His threshold is around 100 dB in his left ear. Just when you think you have it under control…
I didn’t think that much could shake us after Ethan’s initial diagnosis, but this shook us. Wow, Ethan was now a cochlear implant candidate. That made the bad news a whole lot better!
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