Friday, July 20, 2012

The Light at the End of the Tunnel


I have written extensively about Eve's up's and downs with feeding and so I want to share this video with you all.  Since Eve received her feeding tube over a year ago she has not been able/willing to drink more than a couple of sips at a time, and she certainly was not able to do it on her own.  Every day we offer her drinks, over, and over, and over.  So many times I have wanted to give up, thinking it is hopeless.

Well, this week we had a major breakthrough! She actually started to tip her head back and take several gulps on her own!   John and I were practically in tears when we saw her actually drinking!  For the last few nights she has been able to drink about 1-2 ounces of milk from a sippy cup.  Here is a little video I took of her doing it.

video

I encourage her by cheering her on and raising my arms.  She seems to enjoy the encouragement because she will take a few sips, put down the cup and copy my cheers.  I emailed this video to Eve's occupational therapist, Ann Mazzeo.  I told the OT "you are not going to believe this!"  Here was her response:

I do believe this!  You made my day!!!!  She needed the "skills & tools" to be able to do this on her own!  This is because she has two awesome parents, that carryover, challenge, and listen..... and they have a daughter that is determined and wonderful to work with!  Thank you for this very happy share.
 We certainly couldn't have done it without all of Ann's encouragement.  Way to go Eve.  Thank you for reminding me that I should never give up or lose hope in what you can accomplish.

And here is a photo and a video of my sweet girl at Gymboree today.

video




Athena 


Tuesday, July 10, 2012

Accepting My Child's Deafness

The Diagnosis

Eve failed the newborn hearing screen at this hospital the day after she was born but I was not at all concerned. The audiologist who ran the test assured us that many babies who have perfectly normal hearing, especially those who were delivered via cesarean, fail the initial screening due to fluid in their ears. At the time, I simply did not have it within me to accept that Eve having hearing loss was even a remote possibility.

When Eve was three weeks old we brought her back for another screening with the same audiologist at the hospital where she was born. Eve failed that test. It was then that a knot of fear began to form at the center of my being.

I got Eve in to see an audiologist at Rady Children's hospital right away to perform two tests. The first test is called brainstem auditory evoked response (BAER) test. The BAER test works by using electrodes to measure brain wave activity that normally occurrs in response to certain sounds - clicks and beeps, etc. The second test is called oto-accoustic emissions (OAE). The OAE test records the sounds that are produced within the ear itself by hair cells inside the cochlea in response to sounds. The existence of these inner-ear sounds essentially confirms that the cochlea and other parts of the ear, including the auditory nerve, are functioning.

On the morning of January 20, 2011, John and I drove the hospital testing center. I clearly remember bringing Eve inside, feeding her until she fell asleep, and then watching as the audiologist ran the tests. My level of anxiety throughout this process rose and rose and I kept repeating in my head "there is simply no way my daughter has hearing loss." That morning was the longest morning of my life.


This is what the BAER test looks like. These photos were taken during Eve's second BAER test on April 15, 2011. Which simply confirmed the original results.





















Once the tests were completed, the audiologist told us the results. She said the BAER test indicated Eve has something called "auditory neuropathy" and that Eve had absent (meaning no inner ear sounds) on the OAE test. The results were the same in both ears. At the time, John and I had absolutely no idea what any of this meant.

The audiologist explained that she diagnoses auditory neuropathy based upon specific abnormal readings on the BAER test that are believed to be related to either the functioning of the auditory nerve or the transmission of signals from the inner ear to the auditory nerve. There is not a lot of research or information about this condition as it has only been diagnosed since the early 1980's. The audiologist told also told us that people who have auditory neuropathy on the BAER can have normal hearing, or hearing loss ranging from mild to severe, or can have off-and-on hearing, with sounds fading in an out or sounding distorted in some way. The audiologist told us that the only way to determine how much Eve could hear is by testing her behavioral responses to sound. So all we knew at that point was that there was likely a problem with Eve's hearing, but we just had to wait to learn more.

As the audiologist was explaining all of this to us, I was overwhelmed with grief. I could hardly think clearly and spent the next thirty minutes trying to choke back my tears as I asked question after question to the audiologist. Eve (and John and I) already had enough on our plate with Eve's feeding problems. I simply could not believe what I was being told.

The Grieving Process


When John and I went back home, we handed Eve off to his mother who, fortunately, stayed with us through those first difficult weeks, and went to our bedroom. We just held each other and cried.

The next day, I was taking a much needed afternoon nap when John woke me up with a phone call from my sister, Hayley. She told me that my other sister, Hayley's twin, Heather had just called her briefly from Taiwan to tell her that Heather had just been contacted by a local hospital and informed that her boyfriend, Mark, had been hit and killed by a taxi. Shortly afterwards, I spoke with Heather when she was at the hospital after she had just identified Mark's body. To this day, that conversation replays over and over in my mind. It is just so so sad.

http://www.taipeitimes.com/News/taiwan/archives/2011/01/25/2003494385

http://www.thewildeast.net/2011/03/a-friend-to-us-all-on-the-loss-of-mark-bennett/

Although I never met him, I could tell what a wonderful person he must have been because he made Heather so happy. They were so in love. It was such a tragedy. These photos were taken just a few months before the accident.







I wanted to go be with Heather so desperately but I couldn't. Eve needed me. I spent the next several weeks simply going through the motions. Pumping breastmilk, trying desperately to feed Eve, and watching her so closely for any sign that she was hearing anything.

On March 1, 2011, since Eve was going under anesthesia for an eye exam, her ENT specialist went ahead and ordered an MRI. The next day she called me to tell me that, based on the MRI, it looked like Eve has no auditory (or vestibular) nerve on the right, and maybe a small auditory nerve on the left. The ENT told me she would order another MRI when Eve was closer to a year old and that it is possible that the nerves just appeared small because Eve was so young. The reason these results were significant is that a child simply is not a candidate for a cochlear implant if he or she does not have a functioning auditory nerve. I will discuss the cochlear implant decision in more detail in a later post.

Over the next few months, John and I became more and more convinced that Eve was not hearing anything. We started putting her in audiology booths for testing. Consistently, she did not respond to anything at all on the right. On the left side, we felt that she was possibly responding to very low tones at a very high volume. She was essentially profoundly deaf on the right and severely deaf on the left. We tried hearing aids. They did not seem to make any difference whatsoever.

Understanding and Acceptance

As it slowly became clear to John and I that we were, in fact, parents of a deaf child, we realized that we had a lot of learning to do. We spoke with doctors, audiologists, and teachers for the deaf. We also sought out parents of children with hearing loss and, most importantly, we sought out d/Deaf adults. We read books, blogs, medical journals, publications put out by the government, watched documentaries,etc, etc, etc, etc. All of a sudden, John and I were in the middle of an debate about how to raise and educate deaf children that has been ongoing for many decades. Practically everyone we spoke with had a different opinion, and believed deeply and passionately that their approach was the best approach. It is a strongly debated, and deeply divided issue.

It was the stories of the Deaf adults that were the most touching to us. So many of them had parents who refused to learn and teach their children American Sign Language and, instead, focused on an oral/aural approach - i.e. forcing their deaf/hard of hearing children to learn to speak and read lips. For some people with hearing aids and only a moderate hearing loss, this approach works. For others, with more severe hearing loss, this oral/aural approach made their lives incredibly challenging and much more difficult than necessary. These people eventually learned American Sign Langauge, and resented their parents immensely for not making the effort to learn how to communicate with them. Many Deaf people I have met are completely alienated from their families, simply due to an inability to communicate with them.

John and I have come to believe firmly that parents of deaf children should learn the sign language that is native to their region and teach it to their children. There is a plethora of evidence that supports this. Here are a couple of articles that discuss the latest research on the importance of a visual mode of communication for deaf children.

http://essentialeducator.org/?p=13033

http://idiom.ucsd.edu/~rmayberry/pubs/Mayberry-CogDev-Hndbok.pdf

Even if a child is capable of learning spoken language with the support of an assistive device, there is absolutely no evidence that teaching a child a visual language will limit his or her ability to develop a spoken language. However, if a child is not provided with access to a full and complete language during the early-childhood period, that child's ability to develop ANY LANGUAGE AT ALL EVER is permanently, and irreversibly stunted.

No matter what, we want to be able to communicate with our child, and we want our child to be able to communicate with the world. John and I have spent thousands of dollars on private ASL tutoring. I have fought her school district tooth and nail and they are now providing her with a deaf tutor who works with her three days a week. We will be able to communicate with our child. It has been so amazing to watch Eve's ability to communicate progress and progress. Here she is signing some of her favorite signs:

Mommy



Daddy


Lion

Book

I am still, and will likely always have some degree of sadness about Eve's hearing loss. Music is something John and I both enjoy tremendously and we are extremely saddened that we will not be able to share that aspect of our lives with her. But Eve loves to dance. I dance with her whenever I can. There are so many other things I will still be able to share with her.

In January, 2012 I was at a restaurant with only Eve and I was reading a book about the psychological impact that being deaf has on deaf children and adults. The man at the table next to me asked me if Eve is deaf and I replied affirmatively. His response was "its not a big deal". At the time, his comment seemed insensitive. Over time, however, I came to understand what he meant. It certainly has been a challenge for John and I to navigate through all the different approaches that can be taken with raising a deaf child. And learning an entirely new language has been costly, can be frustrating at times, and has been extremely humbling.

On the other hand, I have met so many wonderful Deaf people who have made so many wonderful accomplishments and contributions to society. I have come to realize that, in the bigger picture of Eve's life, while being deaf will shape her identity in many ways, it is not something that will limit her ability to succeed and thrive or to do anything that she sets her mind on doing. And today's technology makes communication for a deaf person even less of a barrier than ever before.

I have come to believe that deafness is only a limitation if a deaf child's parents, family, friends, educators, and even society at large, view it as such. If the people in a deaf child's life fail to accept who the child is, fail to fully support the child's natural form of communication, or fail encourage the child to reach his or full potential, then that child will certainly be set up for failure. But that failure is not because the child is deaf, but because the child's deafness was not accepted, properly encouraged, supported, and even celebrated.