failed newborn hearing screening

[onetrumpeter]

Our ydd was born right at 33 weeks and in the NICU for 25 days.  She failed the ABR hearing screening twice just before her discharge.  I honestly wasn't too concerned as I'd heard about fluid remaining in their ears esp after a c/s birth, even though she was about 24 days post c/s when then did the ABR.  But then at exactly 7 weeks old she failed the followup OAE we just had on Monday.  Our next step is a BAER which thankfully since she's so young they'll just do while she's asleep rather than sedate her.  Hoping I can get her to sleep for the chunk of time they want, though!

I'm pretty heartbroken as it seems unlikely that her hearing is normal.  We haven't noticed her respond to any sounds here at home, either an intentional loud clap behind her head to see if she'll startle, or any of the ruckus caused by her older two siblings.  She does look at our faces but it doesn't seem to necessarily correspond to when we're talking to her.

Would love to hear from people who've been in a similar situation.  Of course I don't know our exact situation; the BAER will hopefully be more diagnostic and tell us why she's failed the screenings...

[journeywooz]

http://www.youtube.com/watch?v=h5ZqKMgXciU  for perspective.

[~cassie]

My middle son was born with severe to profound hearing loss and Auditory Neuropathy.  He responded to no external stimulus.  We chose to have him implanted with a cochlear implant on his right ear at 12 mths and one on his left ear at 24 mths.  They really opened his world to sound and he is doing fantastic!  He is 5 and starts kindergarten tomorrow and is almost completely age appropriate for receptive and expressive language.

[hdirks]

I know it's heartbreaking to first get that news. My daughter is now 3 and has profound loss in both ears and was bilaterally implanted with cochlear implants at 14 months. She has had them for 2 years now and is just now starting to mimick the very basic speech sounds and "babble" like you would expect from a hearing infant. But she also has a lot of other complex issues and brain abnormalities which is why she is still so far behind even with her cochlear implants. If you have any questions or anything feel free to ask! Good luck!

[PatchChild]

Hugs to you mama, the waiting to know is tough. In some ways, it's harder than once you have news.

My son was born with bilateral moderate hearing loss. Basically, his hearing starts at normal conversation level. He's worn hearing aids since he was five months old. He's 5 now and if I don't tell people that he has a hearing loss, they would never know. He has crazy curly hair so you almost never see the aids and he has the vocabulary of an 8 year old so that won't tip you off.

DS was an odd kid when it came to developing language. He didn't babble, at all. He said Ah until he was 14 months old, that's it. By the time he turned two though, he was speaking in 5-8 word sentences. Kids really do develop at their own pace.

The biggest things for us in the beginning were getting early intervention started right away and connecting with other families in the area. Early intervention was fantastic, they come to your home, on your schedule, and play with your babe. It's not therapy, it's play and they explain to you how to adapt your play as needed. Lots and lots of great ideas.

As for connecting with other families, priceless. Our audiologist runs a family support group. They have been great for the "someone tell me my baby will be ok," moments, as well as for the "what kind of hat can he wear over his ears and still hear in the winter," moments. We also attended a playgroup at a school for the Deaf and added sign language to our mix. I think DS outgrew the need for sign well before we stopped using it.

These days, aside from making sure he has extra batteries in his backpack for school, it's really not an issue we notice. He's not receiving special education support or speech therapy because he just doesn't need them. He takes off his "ears" at night after stories and we don't worry about keeping him up no matter how noisy we are. He's a fantastic kid who happens to wear expensive electronics all the time.

[onetrumpeter]

Yes!  the waiting to know is feeling awful.  I can only speculate that she doesn't hear anything as we've never seen her startle to a loud noise or turn to a sound or voice or anything.  but the BAER should tell us more, I hope...  the trickiest part will be that they say she has to "arrive sleepy and hungry."  I'm supposed to feed her when the audiologist says so and she's supposed to be asleep for two hrs to do the test.  if she's awake we'll have to make a new appt.  it's a good 90 min away and I'm so nervous she'll not be as sleepy as she needs to be!!  sleepy is different from overtired, kwim?  overtired I might be able to pull off with more certainty...  she's still a "newborn" according to her "adjusted age" of 5 days past her due date, but less sleepy than in her earlier days.  six more days til the test.  I'll update!

thanks for all the support - the video made me cry, and i'm not at a point where I can agree w/ all her points but I get the idea behind them.  yes, I'm grieving.  music is so important to me, let alone speech...  but our family is flexible!  we would gladly learn asl and consider CIs or hearing aids or whatever we deem (there might not necessarily be consensus on that?) would most help her... it's just a hard thing to absorb.

[~cassie~]

Grieving the loss of the child you thought you were getting and didn't get is a very normal thing.  It IS very scary, the unknown!  It takes time to get to a happy place, where you can actually see that your baby will be fine.  We were so scared that our son would never experience the joy of music the way we do, that we would never get to hear him speak "mama, daddy, I love you, etc" and we grieved, I know I did for about 2 years!  But at 5 years old he is signing and talking and doing everything else other 5 yr olds are doing and now I wonder why I wasted all that time being sad.

[fairejour]

My daughter also has a hearing loss. She is 9 years old and has bilateral cochlear implants. Our journey has been very complicated and has included both ASL and hearing aids as well as now having cochlear implants and she now hears and speaks. 

First step, take things one day at a time. If you need to cry, cry! There is a loss, it is the loss of your expectations. That is fine. But, if your child does have a hearing loss, especially a significant one, you'll need to roll up your sleeves and get to work! 

I would look into the video series "Signing Time". They are a very fun way to learn some basic easy signs (which will be helpful hearing loss or not!) Start learning those easy signs, and start using them every day. Even if your child turn out to have perfect hearing, it is a great way to communicate very early.

Also, look into joining the yahoo group Listen-up groups.yahoo.com/group/Listen-Up It is a group of only parents with children who have a hearing loss. It is a wealth of knowledge and support.

I would also like to share this video with you http://www.youtube.com/watch?v=cPfY8ToXLiM&feature=player_embedded It is my daughter reading a story about a month ago. Her speech isn't by any means perfect, in fact, she received her implants EXTREMELY late and compared to the outcome your child will likely have, she is a massive failure. So, watch and see how great even failures turn out today 

You can check out my blog, and read our story http://www.misskatsmom.blogspot.com/

And PLEASE PM me!!

[fairejour]

Oh, and I don't know where you are from, but check out http://www.handsandvoices.org/ They have a program called "Guide by Your Side", that is run by parents, just to support other parents through the process of learning that their child has a hearing loss.

Oh, and get used to having closed captions on your TV!

[onetrumpeter]

thanks again, ladies. I'm having peaks and valleys, emotionally.  some hours I feel sorrowful and others I feel like, "OK, we can do this - we'll figure it out and there's clearly a lot of support and assistance out there."

fairejour, thanks for the links!  My computer for some reason couldn't open your blog (I think I have browser problems) but the youtube of her reading Chicken Little is *awesome*  She's so cute. I love seeing her reading, she is so expressive - and how she keeps looking at the camera with expression.  how old is she?!

cassie - thanks, I don't want to waste time being sad but I know I'm going to have to process this... whatever exactly it is.

how confident can I be in the results of the BAER test?  (assuming she sleeps well through it and we can do the whole thing!)  I guess I'll also have to ask the audiologist about it.

augh.  I thought I'd have to look at her medical records to find out which abx she had in the NICU but the family support nurse from the NICU called me back and said it's on the discharge papers.  she told me over the phone: ampicillin and gentamicin.  We have a "case manager nurse" from our insurance company who calls to check in on us.  When I told her about the repeated failed hearing screenings she asked, "she wasn't on gentamicin, was she?"  I guess it's an ototoxic drug :(  So who knows if that's a contributing factor in our situation but it was heartbreaking to find out.  She was on it for four days for suspected sepsis.  I think it was just preventive, but those early days were a fog for me.  

[fairejour]

Originally Posted by onetrumpeter 

thanks again, ladies. I'm having peaks and valleys, emotionally.  some hours I feel sorrowful and others I feel like, "OK, we can do this - we'll figure it out and there's clearly a lot of support and assistance out there."

fairejour, thanks for the links!  My computer for some reason couldn't open your blog (I think I have browser problems) but the youtube of her reading Chicken Little is *awesome*  She's so cute. I love seeing her reading, she is so expressive - and how she keeps looking at the camera with expression.  how old is she?!

cassie - thanks, I don't want to waste time being sad but I know I'm going to have to process this... whatever exactly it is.

how confident can I be in the results of the BAER test?  (assuming she sleeps well through it and we can do the whole thing!)  I guess I'll also have to ask the audiologist about it.

augh.  I thought I'd have to look at her medical records to find out which abx she had in the NICU but the family support nurse from the NICU called me back and said it's on the discharge papers.  she told me over the phone: ampicillin and gentamicin.  We have a "case manager nurse" from our insurance company who calls to check in on us.  When I told her about the repeated failed hearing screenings she asked, "she wasn't on gentamicin, was she?"  I guess it's an ototoxic drug :(  So who knows if that's a contributing factor in our situation but it was heartbreaking to find out.  She was on it for four days for suspected sepsis.  I think it was just preventive, but those early days were a fog for me.  

My daughter's hearing loss was absolutely caused by her stay in the NICU. She had ototoxic drugs, long term ventilation, low o2 sats for 6 hours, as well as a heart-lung bypass that has a huge correlation with hearing loss. We had to accept that our choice was deaf or dead, and we are perfectly happy with deaf!! 

Once you have the BAER test results you will have a definitive answer. It will give you a yes or no on hearing loss, as well as a "range" of hearing. Te loss could be "mild", "moderate", "moderately-severe", "severe" or "profound" (or a sort of combination of those terms). Almost no one is completely deaf, there is always *some* residual hearing. If your child has a moderate or less loss, hearing aids will be used. If it is severe or profound, they would still give her hearing aids, but likely she would be a cochlear implant candidate. 

My daughter is 9 now. As I said before, she was EXTREMELY late implanted, and would be consider a "failure" by today's standards :) Here is a video of kids who have graduated from my daughter's deaf school http://www.youtube.com/watch?v=7Il1oGFsiVY&feature=youtu.be They are all deaf, and have been deaf since birth...today is an amazing time for our kids

[fairejour]

The test is tomorrow, onetrumpter, right? I'll have you in my thoughts all day!

[onetrumpeter]

yes, the test is tomorrow am!  I'm most anxious about making sure she is sleepy for the test...  I'm sleeping at my parents to avoid a long commute and for help w/ the older two.  thanks for praying for us!!!  will update!!

[fairejour]

Onetrumpeter, how did the BAER test go???

[onetrumpeter]

whew.  long crazy day.  Our dear little one is hearing no sounds at any of the frequencies or volumes tested - profound hearing loss in both ears.  There was a possibility she might have detected the lower frequency in her left ear but it only showed up once.  The AuD is going to send the data to a colleague to have another pair of eyes look at it in case we need to come back, but she was able to do the tests a number of times.

It's blowing my mind but at the same time I'm so glad to finally have a dx and make action.  Our pediatrician (love her!) called tonight and recommended I be like a horse with blinders on while getting through the burning barn.  It sounded better the way she said it but I know I need to roll up my sleeves (I think Fairejour put it that way? :) ) and get to work asap to best help our little girl.  Lots more appts and testing coming up.  An EKG, urine check, bloodwork, all to look and see if this is part of a syndrome or find the cause and see if the deafness is a symptom, IIUC.  We're hoping cochlear implants will be possible and helpful.  My husband is an elem school principal and talked to one of the county audiologists today who gave us a lot of info and also recommended to get in touch w/ Johns Hopkins asap.  Our ped is familiar w/ the ENTs at Children's so I'm not sure but the AuD who did the BAER also rec'd Hopkins...  Lots to research but I feel urgency to move quickly...

thanks for thinking of us!!  will update!

[fairejour]

Hugs! I know this probably isn't the news you wanted, but it will be ok. You just took your first step on a lifelong amazing journey!

So, with a profound loss, your best possible option for access to sound is cochlear implants. Your baby will still be fitted with hearing aids (as powerful as possible, as soon as possible but I think your hospital will probably have loaner aids, so you don't have to buy them), and will need to wear them for a trial period (usually 6 months). After that, if you have a goal of a listening and spoken language outcome, I would recommend getting your baby bilateral cochlear implants as young as possible. I have heard of parents getting one done by 6 months (which is amazing!) or two by 9 or 10 months (still outstanding!) The FDA says 12 months, but many surgeons are pushing for earlier.

You should contact your local early intervention service. You need a teacher of the deaf and an "auditory verbal therapist" assigned to come to your house as soon as possible. They will help you write up an IFSP, which will give your baby "goals" for language growth every 6 months. She need never fall behind!   Assuming you want to add in some signing for communication, there would be goals for that too. The TOD would help the family learn signs and how to work with baby to maximize language growth.

Where do you live? Take a look at this map http://www.oraldeafed.org/schools/index.html If any of these schools are within an hour or so of you, you MUST contact them! They are the absolute leading, cutting edge providers available!

I will write more later!

[~cassie~]

Hugs!  I am going to ditto everything Fairejour said.  If you decide to get implants, push for them as early as possible and both at the same time if possible.  My son had one at 12 mths and 1 at 24 mths and is doing fantastic, but if we had done them together or pushed for even earlier implantation, we would most likely not have a language delay at all anymore.  If you are interested, there are a few facebook groups, "parents of children with hearing loss" and "parents of children with cochlear implants" if you want to check those out, they have lots of info and are very helpful with the everyday stuff that parents with kids with hearing loss have to navigate.  If you would like to look at my blog that I have of our journey with our son, here is the link  http://aidanriley.blogspot.com/

[fairejour]

I would recommend joining the yahoogroup CICircle. It is a group just for parents of kids with cochlear implants. They will be able to help initiate you into the world of hearing loss and cochlear implants (if that is what you are wanting to learn about). It is an extremely "oral" group (meaning that almost all the families are working on a listening and spoken language outcome for their child), but they are very open and helpful, both in obtaining services and just daily living with a child with a profound hearing loss, day to day stuff. Here is a link to their site http://www.cicircle.org/ and the group itself http://groups.yahoo.com/group/cicircle/

Also, if you go to youtube and just put in "Signing Time", there are tons of videos there to get you started with some basic signing for your baby. Even if you implant as soon as possible, there is going to be almost a year where your little one has little to no access to spoken language. That is why I recommend some baby signs. I would learn what is useful for your family, things like "eat", "sleep", "diaper", "mommy", "daddy", "brother", "sister", "more", "all done" etc. Just the words that a baby would normally pick up in the first year of life.

This will be a time of overwhelming information, and big decisions. In addition to whether or not you want to choose an implant for your little one, you are going to need to choose a language outcome. It is how you picture your child communicating when they are grown. Then, once you choose your language outcome, you will need to decide how you want to reach that goal. There are several different communication methodologies that will all claim that they have the best way to get your child where you want them to be. "What works for your child is what makes the decision right" and "if it isn't working, change it!" are the two best pieces of advice I can give about communication choices.

[fairejour]

Here are some websites that I would recommend taking a look at:

http://www.raisingdeafkids.org/communicating/choices/

http://www.ncbegin.org/

http://www.handsandvoices.org/

And if you want to learn about cochlear implants, and want first hand experiences form those who grew up with implants (this site is HIGHLY biased towards CIs and a method for teaching deaf children called "Auditory Verbal", I happen to not agree with everything they say, but there is  lot of good information) http://cochlearimplantonline.com/site/listening-and-spoken-language/

This site is much more pro signing, just to be fair to the other side! http://www.deafchildren.org/

Now, I have  personal bias, because of the journey I have had with my own daughter. I have seen both sides of the coin, and have had a child who absolutely could not understand a single spoken word but was age appropriate in language due to ASL, and a child who now wears bilateral cochlear implants and listens and speaks and is functionally 100% oral. So, I believe that all the options have pros and cons. I feel like both sides tend to downplay the cons, but if anyone say that there just no downsides to this or that choice, that person is lying. They are not someone you want to be working with because they are letting their personal bias get in the way of letting you make an informed decision.

I would love to answer any questions you have. This is truly my passion. I love helping parents and this journey has completely changed my life. I am now in school to become a teacher of the deaf myself. 

[hdirks]

Hugs to you! I know it can be hard to hear and overwhelminng at first. Just take your time and make sure you understand everything and are doing what is best for your family and your child. My daughter also has profound loss in both ears and multiple other special needs but is still undiagnosed at 3 and a half and we still have no clue what caused her loss, we will probably never find out. If you haven't already I would strongly encourage you to check out www.HandsandVoices.org and find the chapter for the state you live in. Not all, but most states also have a program called Guide by your side which is a part of Hands & Voices that will actually match you up with another parent who has been through everything that has an older child with hearing loss so you can get more of the parents perspective and just have someone to talk to. It's a wonderful organization! I have been volunteering with them for my state for the last year and helping families with children with hearing loss is also a huge passion of mine, so if you have any questions please don't hesitate to ask! It's always better to be able to talk to someone who sort of knows what you're going through. Good luck with everything!