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Owen's Surprise *Audiologist Update

post #1 of 17
Thread Starter 
(x-posted to Life with a baby)

What a long day. Owen got referred at the hospital from his newborn hearing screening and so we had to drive into Boston today for the long and involved hearing test. Not a fun drive right through rush hour traffic. I give this boy credit though, he did great.

I laughed when I got the letter describing the testing. Your baby has to be asleep for it, so they recommend keeping your baby awake until right before the testing is scheduled to start, and then nursing them to sleep. Anyone want to tell me how to get a 9 day old to agree to this? Really though, I was surprised, he cooperated and slept great.

Sadly though, Owen has moderate hearing loss in both ears, of the permenant type. He can hear, but will miss most things quieter than conversation between two people who are close together. We're going to be seeing a specialist to get him fitted for hearing aids as soon as possible, and to start working with early intervention to get my DH and I up and running with sign language to supplement spoken English from as early an age as possible. The state has aprogram for parents where they send a sign language tutor to your house to teach both parents and child. Fortunately, Massachusetts has some fantastic resources available for free for us to take advantage of. We're very lucky with that.

Does it make any sense that I'm more stressed about telling the family than I am about dealing with this? Maybe it's just the SpEd teacher in me. I know he'll be fine, but the family is going to be stressed, especially since this is the first grandbaby on either side.

Owen's hearing was a complete surprise. No hearing issues at all in my family. After a good (?) night's sleep though, I'm continuing to feel positive. I'll make appointments for him today for the specialist to get him fitted for hearing aids, as well as a pediatrician with a specialty in hearing issues. And to think, yesterday morning my big concern was hoping he'd gained back up to his birth weight. We're going to wait until we've had those appointments before telling the family though, just so we have more info to reassure them with.

Anyone have any similar story they're willing to share? Or just some good advice? Thanks for listening.
post #2 of 17
Oh my! Well, I'm glad you are handling this so well. I'm sure your background makes it easier to cope with the idea of special needs. I hope you are feeling as calm as your post sounds.

We are very fortunate to be surrounded with such spectacular resources in this area. I assume they sent you to Children's Hospital? DS had some testing done there when he was tiny and maybe having seizures, which was terrifying to me (and worked out fine, thank God), but they are really, really good.

No special advice. Just hugs.

Good luck with the sign language. At least there are SO MANY mommies and babies learning it nowadays. That might actually make things easier than it would've been even 10 years ago.

post #3 of 17
I'm certain he will do great with sign language. I assume that you will be using ASL and not "baby signs." Baby signs are a pet peeve of mine. Both of my children had around 300-400 signs (that I had seen them use) by around 18 months. While that is on the high side, it definitely shows that children can readily learn signs and use them.
post #4 of 17
Wow, that's a lot to be hit with right off the bat; as Willo said though, you seem to be handling it really well. Thank goodness we can have these tests done at such an early age! Hearing is such an important one too.

post #5 of 17
I'm sorry you were hit with this out of the blue, and I'm glad you seem to have a good perspective on it. A very good friend of mine's ds was born without ears - it was a total surprise, for some reason they didn't catch it on the ultrasound. Anyway, she expressed the same thing you did. She was more anxious about having to tell family than about the actual condition. Her little boy is going on three now, and they are working with a specialist and other things. Her son was given a hearing aid that is attached to a headband type thing and it seems to work fairly well. They were actually pretty well equipped to deal with the unexpected, because her husband was born without one of his ears - apparently it can be genetic.

My sister's sil had two children that were born with complete hearing loss. They were given a type of hearing aid that actually attaches to their heads in order to make vibrations for them to hear. It's not a cochlear, but I can't think of the exact name. Anyway, they had to be 6 months before they could get them, but they can actually hear very well with them, but it's not really "hearing" as we think of it. I know I'm doing a crap job of explaining this, but my point is that science is really amazing when it is doing what it does best, and I'm really glad we have it around in cases like this. Please keep us updated on how you guys are doing!
post #6 of 17
Read this yesterday - and must of lost the post. Good luck to you - everything can be managed so well with early intervention (not to say, I wish you weren't dealing with it).

I would love to hear about signing and intervention with hearing issues - I am sure you have already googled your little eyes out.

Good luck with the family, I can imagine it might be a bit difficult to keep the emotions in check.

post #7 of 17
that must have been quite a shock, i think we all go along to these routine test just pressuming nothing will ever be wrong. Glad at least you guys know so early and can be proactive from a young age
post #8 of 17
Thread Starter 
I've said no to lots of testing throughout the pregnancy but said yes to the hearing screening because it has results you can do something with. too many of the screenings and testings along the way are basically useless since you can't use the results for anything. At least the hearing screening lets me be proactive.

Thanks so much for all the kind words. I'm feeling like DH and I are coping well, though I did have a complete meltdown last night. DH was working, so no surprise I was more emotional, and Owen switched to wanting to eat every 2 hours, for an hour at a time. It hit me how many people are going to look at him and see his hearing aids before they see the baby wearing them. Not fair for him. Funny though, that prejudice from others is more of my concern. Ok, that and having to deal with the SpEd system from a parent perspective as well as from a teacher perspective.
post #9 of 17
Originally Posted by PatchChild View Post
...It hit me how many people are going to look at him and see his hearing aids before they see the baby wearing them. Not fair for him. Funny though, that prejudice from others is more of my concern. ...
Not to say he can't be "loud and proud" as an "out" hearing-impaired kid, but, to save yourself the stress, I'd say look for lots of cute hats!

My Russian in-laws are maniacal about DS wearing hats all the time if it is even remotely chilly, and with the ears covered, to prevent ear infections. (This isn't worth fighting about for me, and, interestingly enough, DS never once got an ear infection. Hmmm...) So I recommend Hanna Anderssen pilot caps. They're super-cute, too.

In the summer, I'm fanatical about sun protection, so DS wears a "legionairre's cap" with the long cape down the back.

Basically, my kid is so used to wearing hats that he waits at the door (and will remind you that he needs one) before going out in almost any weather.

Just a thought.

You are handling this very, very well. If you need anything more from us, please tell us. We're always so happy to listen.

post #10 of 17
I have to say, it sounds like Owen was born to the right mama!!!

I'm very impressed that you have already made so much progress in figuring out how to help Owen with his hearing. You are doing great, in the face of an issue that is probably really stressful for you. <hugs> to you!!!!
post #11 of 17
Wow, this is a lot to deal with right after the birth and all the adjustment that comes with a new baby. You are absolutely doing the right and best thing for Owen and yourselves. I was born with moderate hearing loss (also with absolutely no family predilection to it) and it wasn't diagnosed until I took a preschool hearing test. The thing I feel I have missed out on the most was never learning ASL. I wore hearing aids after my diagnosis, and never felt like I was treated differently. I had a harder time when I stopped wearing them as a teenager and young adult because I couldn't participate in conversations very easily!

Please don't be hard on yourself for grieving a little bit for what could have been. I'm sure you have helped parents through it yourself - sometimes we forget to be as kind to ourselves as we are to others. Things will get easier as you are out and about with him and see that, really, so many times people just don't even see what is right in front of them! A little friend of Livvie's wears hearing aids and hers are purple with pink molds - so darn cute.

Take care and keep us updated!
post #12 of 17
Wow! That's a lot to deal with. It's perfectly ok to be upset about this & worry about Owen's future. You are being so active & proactive, I'm sure Owen will have the best outcome possible. Technology is wonderful today & with your help, Owen will have a great, completely full life. My cousin has been hearing impaired since birth & she's done everything, college, marriage, kids, etc.

As far as your family, this is your brand new baby & you, DH & Owen need their support. Yes, it's the first grandbaby but like I said, the rest of the family needs to support you (& it's ok to let them know that).

Hopefully, Owen will have plenty of experience with tolerant people who won't see his hearing aids first. I hope people are way better these days then in the past where any disability was seen as a negative. Just take it one day at a time and don't be hard on yourself. Owen is lucky to have such smart & caring parents.
post #13 of 17
Thread Starter 
I got to visit the audiologist today and once again Owen behaved angelicly. We got to talk over his hearing results in deyail, and hear a computer simulation of what a regular conversation would sound like, given Owen's hearing loss. At the moment, he'll hear most of a conversation 6-12 inches away, but nothing beyond that. It was scary to see how little he's hearing now.

We did the fitting for hearing aids as well, and they're good enough these days to bring his hearing up to a normal range. The aids are even smart enough to amplify quiet sounds lots and to not amplify really loud sounds at all. The aids should last arleast 5 years but the ear molds get reolaced as he grows, so lots and lots of replacements for this first year. We decided to skip all the pretty colored aids for now. The big irritation now is that insurance doesn't cover hearing aids at all, so it's time to do some serious fund raising and saving. $2000 for the pair, plus batteries every 2 weeks or so. At least the ear molds are included for the first year, no matter how many he needs.

And now the fun, telling the families now that we have details.
post #14 of 17
wow, I am not sure what to say other than it's great that you're doing so well and I'm sure Owen will do just great with the hearing aids and the signs. good luck!
post #15 of 17
Oh my goodness, $2000! Yikes. That is amazing though that the aids can bring his hearing up to a normal level! Will you still need to pursue sign language and other developmental interventions if he can hear normally, or close to normally, with the hearing aids?
post #16 of 17
Good that you're already making progress with his treatment. I now that hearing aids are terribly expensive, considering that is not hearing loss due to old age it's ridiculous that your insurance won't cover it. Hopefully, your family will be generous & otherwise very supportive.
post #17 of 17
Originally Posted by PatchChild View Post
It hit me how many people are going to look at him and see his hearing aids before they see the baby wearing them. Not fair for him.
I'm reminded of an incident in WIC, back when I was carrying my son...

There was a couple there with their baby girl. She was probably between six months and a year. I know her Daddy was helping her stand up and walk while she held his hands... I also know that she had a breathing tube, an Oxygen canister, and a terribly deformed head.

I don't know what was wrong with her, and I didn't ask. I don't know if it was something that will get better as she gets older, or she's going to have to live with. But I watched this little girl, watched her interacting with her parents... Watched the obvious love and joy there. And wound up telling them with a smile on my face, "She's beautiful." And meaning it.

Yes, some people will see the hearing aids, and get "stuck" there. But those aren't the people your little Owen needs, anyway. The ones who matter will see past that. (The ones who matter will forget they're there.)
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