New, lost and alone

iVillage Member
Registered: 02-08-2010
New, lost and alone
4
Mon, 02-08-2010 - 7:28pm

My name is Sarah. I gave birth to twins at 26 weeks in December 09. One twin did not survive. I just found last week that my surviving DD is bilaterally deaf. Needless to say, this is a shock. My concern isn't that she won't have a wonderful life, I know that there is a huge deaf culture and that deaf people can do amazing things. But I am terrified! I have done research and am so scared that she will feel isolated and pull away from her older sister or father and I since we can hear. And there are SO many decisions to be made and conflicting opinions on what is best, I am terrified of making the wrong decision for her and setting her off on the wrong foot.

My husband is in the Navy and is at sea right now and the ship is currently on a communication black out so he doesn't know yet. I called my mother in tears and her reaction was to ask me what sins I have committed to have a, and I quote, "useless retarded daughter". I hung up on her. I was feeling so guilty about how premature the twins were, my body failed them and my DS died because of it. Now my DD is deaf because of it and has a huge obstacle to over come. I pray that I can help her to do that...right now I am just so lost.

iVillage Member
Registered: 03-24-2003
Tue, 02-09-2010 - 9:20am

I am so sorry for your loss.

Maria :)                


iVillage Member
Registered: 12-03-2007
Tue, 02-23-2010 - 1:00am

Sarah,
Thank you for reaching out here. Maria gave some great advice there. Do try to find a support group; it may make all the difference in the world. Also, try to focus on the things that need to be dealt with immediately (greiving, rejoicing in the new life of your daughter, helping to get her the best care possible). Once she is up and going (you know full term or whathave you) then you'll have a bit more energy and strength to make the best choices for her.


My daughter was born with moderately severe-severe bilateral loss diagnosed at 2 1/2 mos (after failing numerous screenings). I don't think I will forget how I felt the day we had the news. It was terrible and I felt a lot of the things you were talking of. I didn't know where people would place her, how she would fit into society, how I would be able to teach her without knowing myself. One thing that really helped me was to ask the audiology staff at our local (or not so local) children's hospital for a parent kit with as much info on deafness as they can give you. That way you can have it at your disposal when you are ready emotionally (it's much better than reading online... which can be overwhelming). I've read some books too - trying to get a feel for the deaf community (since i don't know anyone else with hearing loss but my daughter)... "Train Go Sorry" by Leah Hager Cohen, and I've read parts of "A quiet World: Living with Hearing Loss" by David Myers, and some of "The Mask Of Benevolence" by Harlan Lane. Also... check out your library for any Audiology text books --- ok well maybe that's going too far, but I work in a used bookstore so I have all of this available to me.


I have seen great things about cochlear implants - and have seen kids at our children's hospital as young as a year or two old who have been implanted. My daughter has recieved hearing aids at 3 mos and gets auditory/verbal (learning to hear/ learning to

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iVillage Member
Registered: 04-29-2008
Thu, 02-25-2010 - 9:46am

Hi, I'm Jill. I don't post very often, but I felt I needed to for you.

First, I'm so sorry about the death of your son, I'm sure he is very special and is watching over you and your family right now. I hope you get the time you need to grieve this tragic loss.

Second, your beautiful daughter! Oh, then to find out she's deaf, it's heartbreaking (I know, b/c my only daughter is deaf also)! You will also need time to grieve for the loss of her hearing. She WILL be fine! So will you and your family (your mother...maybe not so much). Yes, it will require decisions to be made, definitely sooner rather than later. Yes, you will have a few harder and different years than you might have imagined, but it will all be okay.

Third, take a deep breath and just breathe - (that's all)

Fourth, let me tell you my brief story. 9 years ago I gave birth to my first baby, a boy, perfect in every way...except he didn't pass his hearing test. No big deal, everybody says, lots of babies fail then get retested and pass. Great! I think! I'll just bring him back in 2 weeks and we'll retest...except he failed again. From there we went through testing and insurance fights (which you won't have in Canada, yeah!) and he got his 1st cochlear implant when he was 10 months old. Caught up to his peers by 2 and a half and went to a "normal" preschool when he was 3. Is now in 3rd grade, and has bilateral implants and does great. Requires no services, except for troubleshooting if the need arises. Gets mostly A's (but he's a perfectionist), has friends and sleeps REALLY well (that's the silver lining of being deaf -- oh how I wish sometimes to be able to turn off my hearing!)

In March of 2009, after 16 weeks of bedrest, the last 9 days of it being in the hospital, I delivered my 4th child, and only girl -- 4 weeks early. She failed her hearing test. (My two boys in the middle hear just fine -- we were told Ethan was a fluke, he's not ... he's got a recessive gene). I was devastated, maybe even more this time b/c she was a girl, and we had a rough pregnancy, and gosh darnit, why can't it just be easy for once? We got her fitted with hearing aids early, then got her implanted at 6 months for the right ear and 8 months for the left ear. We're doing therapy (at our house 3 times a week), but she's talking (really, she says about 6 or 7 words very clearly), walking and generally really happy. We're nuts about her.

I just wanted to take the time to write and let you know that although your down in the dumps there is hope (and oh, yeah, I battled severe depression -- I finally got all my meds straightened out and JUST NOW am starting to feel like myself again). Don't give up hope. If you need to talk, post a message and we'll figure out a way to chat either by email or phone.

I'll be thinking of you and your family.

Jill

iVillage Member
Registered: 03-24-2003
Thu, 02-25-2010 - 3:36pm

Thank you for sharing ladies!!

Maria :)