Filed Under (Hearing Loss) by Kel on 05-02-2009

I found this article particularly intriguing. I think I read elsewhere, in a related article, that they are looking into the feasibility of maternal testing – probably another one of the tests that can be run but often isn’t for pregnant women who have no reason to think themselves at risk. Ironically, sort of like the CMV maternal testing! Boy, have I learned a thing or two about accepting the tests and knowing your risk factors ahead of time…

Anyway, the sum of the article is that they are now studying and seeing a link between a certain type of strong antibiotic and profound hearing loss. The antibiotics are used for patients undergoing treatment for a few serious conditions (chemotherapy, for example), and are also commonly used in NICUs to fight bad infections in premature and sick babies. They’re a sort of “jack of all trades” antibiotic, used for a number of different things, but in people with certain genetics, it can trigger profound and almost immediate deafness.

Sound familiar?

We will probably never know what exactly caused Danny to lose his hearing in the first 2 months of his life. When a child is diagnosed with a profound loss, typically they undergo testing to find the cause, but with a congenital CMV diagnosis everyone assumes it is that. After all, the disease is rather good at causing hearing loss. However, when I first found that antibiotics can sometimes cause hearing loss, it clicked in me. I honestly believe that his bacterial infection and the immediate and severe treatment needed to prevent it from killing him left his hearing as a casualty. CMV typically causes progressive hearing loss, and I know one or two people have commented that it’s odd that he passed his newborn hearing screen with no problems and then came up with such a profound loss in such a short time.

This article just makes me more firm in my belief that it was the antibiotics, and not the CMV, that left him for deaf. Of course, the argument could be made that he only got the infection because he had CMV, which lead to the treatment that bottomed out his white blood cell count.

So what’s the solution? Who knows. Maternal testing could be one part, to see if there is a disposition there to lose hearing with those types of antibiotics. Finding alternate drugs that are just as effective at saving lives without potentially killing cochlear hairs in the process. I’m glad they’re looking into it. Maybe, 10 years from now, a child will be in a similar situation to Danny’s and come out with his or her hearing intact because of the things they’re doing right now.

     

 
Filed Under (Hearing Loss, Motherhood) by Kel on 08-11-2008

Ever since the ultrasound that determined my placenta was no longer low-lying, but something wasn’t quite right with the baby, I’ve been playing a game of catch up. Catch up on information about CMV. Catch up to those who know how to handle the NICU. Catch up to those who know about hearing loss, cochlear implants, hearing aids, etc. So often, I have found wonderful people – online and off – who have been there before and taken a moment to give me a hand up. They offer advice, strategies for coping, and most importantly understanding … a feeling like I’m not the first, nor will I be the last, to go through all these things.

Every time I came across one of these people, I marveled at them. I envied their strength as I learned from their knowledge. They seemed to come from a place far away: a place of I’ve Been There, and It Will Be Fine.

A few days ago, I realized…I made it. I’ve crossed to the other side, from needing a hand up to offering one myself. My old boss came in to the office – she still works for the company, but has moved out of town and works from home – and we spent a while catching up. When things came around to Danny, she mentioned that a friend of hers in her new home has a daughter who was just diagnosed with a profound hearing loss. They have no insurance, and are unsure where to go, what to do.

Suddenly, I found myself doling out information. Everything I’ve learned and been through, I wanted to pass on, though I only did a small bit with an emphasis on “please, give her my number, tell her she is more than welcome to call any time.”

It’s a pretty awesome feeling to be able to take what I’ve learned and help someone else with it. 5 months ago (only?), as the audiologist sat down and told me he had failed spectacularly, I never imagined I would one day be helping and consoling someone else, telling them that it would be all right. Sure, I wanted to a while ago, as I passed the audiology lab on the way to Danny’s MRI. But I actually got to do it. I’ve become the woman on the other side of chaos.

I hope I get many more chances in the years coming to offer someone else a hand up the way so many have me.

     

 
Filed Under (Hearing Loss, The World, Toddlerdom, Year One (Daniel)) by Kel on 30-10-2008

It’s hard not to get caught up in looking forward to next Halloween. Don’t get me wrong, I am loving this one! Eric and I have had so much fun with window stickers, pumpkins, spiders, you name it. I brought in the pumpkin this morning that we are going to carve tonight and he was so, so excited – he could barely contain himself! I went to put it on the table and he was quite upset; he wanted it on the floor “right there!!!” so that he could check it out and sit by it as I got ready. There is a huge spider on a house on the way to daycare (fake, as big as the house) and every morning as we drive by it he exclaims, “Big Spider!!” He is totally loving it.

I do think forward, though. Next Halloween, Nat and I will be able to compare costumes for our little ones. I do believe it will happen, I’ve gotta believe! Next Halloween, Danny will be able to hear Eric’s excited squeals and give his own. I look at all of the words Eric has learned for Halloween and fall and am so excited to see what Danny picks up next year. Plus, of course, just double the fun with two boys to enjoy the holiday!

We did Fall Festival at daycare yesterday. Neither of the boys minded any of the costumes at all, and Eric had a lot of fun. We saw a lot of his friends dressed up too, they were far too cute. Of course, so were my boys. There was a girl about 12 helping the festival, part of a girl scout group doing community service, who had bilateral cochlear implants. I didn’t want to make her uncomfortable, so I didn’t ask any questions, but she commented on Danny’s hearing aids and I shared that he was in the process of going bilateral himself. It was pretty amazing to watch her hear without any problems even in the crazy bussle of a daycare festival with kids everywhere.

     

 
Filed Under (Hearing Loss) by Kel on 19-10-2008

So I’m changing Danny today, and he is right out screaming. (He’s teething and having a miserable go of it, only wants to be held and cries most times you put him down.) I think to myself, By this age, Eric was doing more than just crying to communicate, he would ‘complain’ and babble in an unhappy voice. I wonder if there’s something the matter with Danny.

Ya think?

     

 
Filed Under (Hearing Loss) by Kel on 30-09-2008

It absolutely amazes me, as I sit back after all of the research I’ve done in the past few months, how lucky we are to be here in the St. Louis area with a deaf baby. One of the most recent news pieces to hit the CI community is a study confirming the safety of cochlear implants in children, authored by Anita Jeyakumar and Randall Clary. Yup, as in the guy I met with yesterday morning. The study was conducted at Washington University Med School … the one that works with CID, our oral-deaf school.

Add to that our pediatrician (Randy Agolia, if you’re in St. Charles county, out on Highway K), who has just been fabulous to me and my boys, and called immediately after finding out Danny was deaf to stress that he was there for us and to recommend ENTs – Clary specifically, and a few others if we couldn’t get in with him – to get us on the right track.

We’ve got an awesome team supporting us. I don’t know how those without such a support network in place manage it.

     

 
Filed Under (Hearing Loss) by Kel on 15-09-2008

A few days ago, in a staff meeting, I was given the opportunity to use the company tickets to go to the Rams home opener. Because it would have been crazy to pass them up, I got them, and so John and I got a friend to babysit the boys and off we went. Having been to only a handful of football games in my life, most of those in the frozen North (Canada), it was quite an experience to see an NFL game in a dome. Definitely fun! And time without the kids, which doesn’t happen often, was quite nice.

Being mom of a deaf child, however, doesn’t turn itself off. More than once, I had moments of revelation, where I just sat back and thought about what I was hearing. The things you take for granted! The roar of the crowd – I wondered if Danny would have heard some of it – was awesome at times and a huge part of the excitement. Being able to hear the pom-poms of the cheerleaders. (How crazy is that?) Picking out words of the referee’s calls, because they were far too quiet if they even announced them at all. All of it reaffirmed that implants are what I want for him. I want to give him the opportunity to hear again, like he did when he was in the womb and shortly after he was born.

The biggest one, for me, was the roving band drum band. They would implant themselves in the crowd somewhere and start playing. Every time, I was able to find them instantly, whether they were behind, above, to the side, or across the field. The first time I did it, I thought to myself, this is why I want him to be bilateral. We have 2 ears for a reason, and it was shown to me quite obviously yesterday.

The appointment to see his ENT and start the process is September 29.

In my wanderings online, I have finally found a CMV success story. This is who I want Danny to be, plus hearing loss of course:

Jeb (6)
Eagle River, Wisconsin USA
Symptomatic cCMV. At birth he had all the typical symptoms, needing several transfusions. He had two months of gancyclovir. Had OT, PT and speech therapy. Taught himself to read. His healthy brain seems to have taken over for the calcified brain. He is just a normal spunky, extremely active little boy.