Information for parents, professionals and adults with ANSD



Sarah's Story

God grant me the serenity
to accept the things I cannot change
Courage to change the things I can
And the wisdom to know the difference.

(Dr. Reinhold Neibur)

This is the story of Sarah....our beautiful daughter who entered our lives on August 2nd, 2002. An uncomplicated pregnancy followed by an uncomplicated full term birth...10 fingers..10 toes....perfect in every way! Except that she brought along a little surprise with her--a diagnosis of AN.

I have kept a journal of Sarah's progress from the day she was diagnosed to the present. It's not a pretty journal. In fact it's quite sad at times but it gets better towards the'll see! I wanted to share with you this journey that we took together.

Sarah's Diagnosis

August 3rd-- Routine newborn screening test. The young lady who put her in my arms answered my question of "How did it go?” with a “She failed an ABR in her right ear and barely passed her left ear.” Alarm bells go off in my head and I freeze. "What? Does this happen a lot?” “No” is her response. “The doctor will schedule another test 2 weeks from now”. That was that…and then she leaves…

The second test is scheduled for two weeks later. OH...I think... I am sure Sarah just has water in her ears...easily resolved. After all, there are no hearing impaired people on either side of the family…why would it start with Sarah?? We bring our daughter home and set to adjusting to life with a new baby…our first!! And we forget….

August 17th-- Sarah on August 17, 2002. University of Colorado ENT clinic. This time Sarah fails the ABR in both ears!! Noting my uneventful pregnancy and birth, the audiologist (Jennifer) votes for a repeat ABR in 1 month, thinking that Sarah just has water in her ears. Six weeks later we are back again and this time the surgeon Dr. Cass checks her ears for water and does indeed find a small amount there. I relax thinking all will be well. Again we are told to return in another month for a repeat check. “Why do I have to return?” I think to myself. We have found the problem…a little bit of water. Just be patient, I am told and please return in one month.

November 7th-- A sad day for us. Sarah receives the diagnosis of AN. I still remember it like it was yesterday. Again she fails her ABR's and the audiologist tells me to wait in the testing room for the PhD of audiology (the name escapes me). I wait 15 minutes. She walks in sits down and proceeds to tell me that my daughter has a rather odd disorder by the name of AN. “She is not deaf but she can’t hear”. After defining for me what exactly AN is, she proceeds to tell me that I should start to learn sign language immediately as this will give my daughter the best head start in life. She gives me some resources for deaf/HOH children and informs me that the coordinator for ECI should be calling me this afternoon. I start crying silently and she hands me a box of tissues and tells me that I still need to wait for the surgeon who wants to chat with me. Formalities. What???!!! I want to go home!!! I want to see my husband!! I want to be able to cry aloud!! But I wait....

There is a full length mirror in the room and I am standing up holding Sarah and watching her sleep. I whisper to her that I am sorry that this has happened...sorry that her life is going to be different than mine...sorry that she will never hear the sound of my voice…sorry…sorry …sorry.

I grieve!! I grieve so hard that I think my heart will burst. And then Dr. Cass enters the room and basically reiterates exactly what the audiologist has said. Never once do they mention the word "cochlear implant". Never once do they give my daughter any sign of hope that she may yet have a chance to hear.
Hope should never be on a need to know basis....

I cry for 3 days straight. Now I know that she is deaf. I see it now where I had not seen it before. I start performing “hearing tests” on her at home. I place the alarm clock near her head and make it go off…nothing…not even a stirring in her sleep. I ring the doorbell…nothing. I get a wooden spoon and a pot and hit it mere inches from her ears…nothing. I cry some more. I throw the biggest pity party of my life!!!

November 10th-- After 3 days of crying I wake up and resolve to find everything there is to know about AN. To the computer I go and shortly thereafter I come across the name "Dr. Charles Berlin". And that is how he enters our lives and gives us our first ray of hope. I am forever grateful to him for his kindness and attention to our family and to our daughter...and to the fact that he has his phone number listed on the AN website!! I call him up …leave a message…and he calls back one hour later!! I don't remember all the details of our conversation…just that he gives us hope.. This is what we need at this time.

He tells us that Sarah's diagnosis is like a trip to Paris... only that we all end up in Italy instead...a different language…a different form of communication. "But I don't want to go to Italy!!" I tell him. Too late for that....Benvenuto a Italy!!

The initial diagnosis is followed by a second Denver Children's Hospital and by an entirely different audiologist/surgeon. Just to make sure. People have been wrong before and we are just hoping. However, AN is still the problem and we have to start coming to terms with this. A CT scan is scheduled for the following week… just to rule out a tumor. (Results are negative for a tumor). Chances that her auditory nerves are not there or are damaged are slim...we will cross that bridge when we need to.

ANSD Information is owned by the parent of a teenager with ANSD and  has no ties to any implant center, audiologist, hospital or clinic.