The gene

[Guest guest]

Hi - I know just exactly how you feel. Our situation is somewhat

different from yours - had we had the connexin 26 link, it meant it was from

both of us (my husband and me) I think? However, we got the call from Galludet

last week that our boys' hearing loss is NOT connexin - they feel very strongly

that it's an x-linked recessive hearing loss. So basically I carry the gene

that causes their hearing loss. I've long suspected this was the case - there

are three other males in my family (my brother, my nephew and my uncle) who all

have some sort of hearing loss that was always explained away somehow and not

thought to be hereditary until my two boys came on the scene. My nephew's was

always attributed to fluid, my uncle worked around a lot of heavy equipment as

my family owned lumber yards and my brother's is a unilateral, moderate

sensorineural loss that we never thought much about. Bill - my brother - is 44

and has never been aided, etc.

When my first son was diagnosed with hearing loss he was a little over 3 years.

By the time he was tested, we figured something was going on. Tommy is now 10

and has a severe, sensorineural hearing loss (bilateral). The big shocker was

my little son, Sam who is now 8. Our audiologist at that time wanted to test

him - she tried to put 14 month old Sam in the booth and that didn't work so he

had an ABR. All I remember her saying that day was " I have bad news " . It

didn't sink in at all that he had a profound loss, or much of anything else.

All I could think about was " I did this to you " . Sam was 15 months when he was

diagnosed. I remember driving him home and crying the whole way home thinking

that.

And folks tell me " oh, you can't think that " but you do and at least for me, it

was something I needed to deal with in order to move on past it. Very, very

painful - I know just how you feel. It's hard right now but you'll get to the

point where you think that your child has your sense of humor, or your pretty

eyes - and you know what? You gave them those wonderful things too!

If you need a shoulder, I think most of us here understand just how you're

feeling.

Be gentle with yourself!

oxox

Barbara

--- You wrote:

Last week I received " the phone call " (Galludet

Research Section). I found out that my daughter

(now 7 yrs.) was born hearing impaired and that we

have Connexin 26. I was speechless/shocked!!! She was

premature and had antibiotics, etc.......so I thought

it was " someone else's fault " . I never really took

the time to morn for 's hearing loss....I was to

busy trying to figure out what to do next and how I

could help her. So, that is probably part of the

problem. Well, even after a week, I'm still crying a

lot... I guess because I can't do anything about it.

I wanted to know; but now that I know, I feel very sad

and strange/different.

Has anyone been through this and feel like they were

reliving the beginning?

--- end of quote ---

********************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

HB 6121, 13A Silsby Hall

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc