The New Stem Cell Research for Hearing Loss

Posted on September 19, 2012 by DeafMom

Back in January, 2012, I talked to the research team at Children’s Memorial Hospital in Houston about the first human trials using stem cells to improve hearing. What follows is an article published in the Communicator:

In my family, there are five generations of relatives who are deaf and hard of hearing. Every now and then, a discussion would come up among us—what if there was a non-surgical solution to restoring hearing? I recently came across an article sent to me via my blog, about the first stem cell clinical trials being done in Houston, Texas. I also came across an article opposing the research.

I got in touch with the research team to find out more about using stem cells to restore hearing. The idea of using stem cells to improve hearing first came about from a casual conversation between Linda Baumgartner and her husband, neurosurgeon Dr. James Baumgartner. “Jim did a few other studies with stem cells for other issues and I asked him, ‘Is this something we can do for babies with hearing loss?’’ said Linda. Jim was working on a trial using bone marrow for patients with traumatic brain injuries and he was intrigued with Linda’s idea so he did some research and talked to several researchers.

Dr. Baumgartner came across previous research done in Italy which showed successful results using mice. “The study used infant mice and exposed them to noise, antibiotics, or both– to create hearing loss,” he said. “All of the mice were injected with human stem cells through the abdomen. The damaged hair cells grew again—the nerves reconnected. The cells from the human cord blood triggered the mice’s own hair cells to grow again.”

The FDA approved a license for the first human trials on ten patients, ages six months to eighteen months. Children’s Memorial Hermann Hospital in Houston, Texas and Cord Blood Registry(r) (CBR) identified two babies to receive the treatment. The first baby, whose hearing loss resulted from CMV exposure, received the first stem cell infusion on January 23, 2012.

I asked Dr. Baumgartner about the side effects from stem cell treatments and he assured me that the procedure had a strong safety record. “Safety is our goal. People are often scared of stem cell research—they freak out,” he explained. “Autologous blood, giving people back their own blood products, is safe.”

Once the trial shows results with at least five infants, the team can request FDA approval for the second phase which will allow an increase dosage of stem cells. The third phase would include double-blind random trials. “I feel my hypothesis is strong and I’m hopeful we will get good results,” said Dr. Baumgartner.

In a discussion with a friend, she revealed that she was scared about the potential success of the stem cell trials. “It scares me to think that we would lose the beauty of deaf and hard of hearing people in the world. The world would be so bland without that diversity,” she said. “Think of how the world would be without the contributions of Beethoven… or Edison… or Vint Cerf—the father of the internet. They are all deaf and hard of hearing and they contributed something valuable to the world.”

My own feelings were very mixed on this. I spent the last twenty six years getting really comfortable with myself after going from hard of hearing to deaf. In sharp contrast to the teen who hid every sign of hearing loss, the teen who became deaf at nineteen learned to embrace a whole new world that included American Sign Language. My world truly opened up after becoming deaf and I saw the change as a blessing. I learned to embrace the gift I was given.

I asked Dr. Baumgartner about research on families like mine—five generations due to a mitochondrial gene. My daughter will pass this gene on to her children. He explained that bone marrow trials may be promising. “Your own bone marrow won’t work. If you use a different person’s blood, one without the genetic cause, another person’s bone marrow would allow the organ of corti to repair itself,” he said.

Talking to Dr. Baumgartner on the phone using an interpreter and learning about the possibility of growing new hair cells—like I said, this brought on mixed feelings. On one hand, there was the excitement at the possibility of progress, of being able to restore hearing. I thought of my siblings—I know each and every one of them would jump at the chance of being able to hear again.

I asked my daughter how she felt. “I want deaf kids,” she said. “It makes me kind of sad to think of the world without deaf and hard of hearing people in it.”

Yes, deep inside of me, there was a bit of sadness. I believe the world is a more vibrant, colorful place with the tapestry of deaf and hard of hearing people who have crossed my path over the years. I cannot imagine a world without them.

Karen Putz is a mom of three deaf and hard of hearing teens. She blogs at www.deafmomworld.com and www.deafhhcareer.com.

Families who are interested in participating in the clinical trial can obtain more information at:
http://www.cordblood.com/hearingloss

Top Ten Deaf Folks on Twitter

Posted on July 11, 2012 by DeafMom

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Of course Marlee Matlin is number one! What fun to be among this cool group of deaf folks:

To Ten Deaf Folks on Twitter

The Sunset I’ll Never Forget

Posted on January 21, 2012 by DeafMom

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I was cleaning out my iPhone and I came across the photos that were taken the day of my Dad’s memorial. For as long as I live, I will never forget that brilliant sunset that streaked across the sky when Jen and I went for a walk that day. Perhaps I was just soaking in the energy of that day and my awareness was just heightened by a sense of loss, but I’m grateful for the gift of that masterpiece.

And how appropriate is it that I came across this poem that I wrote in junior high, while cleaning out my desk today:

A dash of red,

Flames of fire,

Smears of gold and

The boldest yellow…

Sunset.

Colors,

Dancing across the sky,

To the last light

Of fading gray…

Darkness.

What I Learned from Physical Torture

Posted on January 9, 2012 by DeafMom

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I heard horror stories about physical therapy so I was kind of dreading the whole process after my ACL reconstruction surgery. The first visit went pleasantly enough. ”Oh, it’s not too bad,” I told my family and friends after the initial knee manipulation.

The second visit was a different story. I nearly jumped off the table when the therapist began massaging my incisions. One in particular was a bit swollen and extremely painful. “You shouldn’t be feeling this much pain,” the therapist said as she continued to press down on the incision. “Looks like you’re building up scar tissue. We have to work that out.” More pain. I held back a scream.

Then there was the famous “bending of the knee.” Despite repeated icing of the knee, mine remained swollen, making it even more difficult (and painful) to bend it. I was pretty darn proud of my 93 degree bend on the first visit.

And then I was introduced to the bike. You know that contraption– it requires more than a 90 degree bend to get those pedals going ’round and ’round. I pushed the first pedal down and tried to bend the knee to bring it back up.

Holy freaking moly! Pain! Worse than childbirth! (And I gave birth at home.)

I looked at the therapist and whimpered. ”I don’t think I can do this.”

“Just pedal slowly.” She set a timer on the bike stand. “Nine minutes.”

She stood there, watching me grimace in pain as I brought the pedal up. I felt like someone was taking a sledgehammer to the knee every time I reached the top. I made it up and over, but not without shifting my hip up and riding on my other foot.

“Good! Do it again!”

There was no way out. I just closed my eyes and tried to get into that zone– the same zone that comes from hypnotherapy. The breathing. The visualization. The knee screamed with every pedal rotation. There was no way out of the pain– only through it.

Just two minutes into the physical torture on the bike, I noticed a big shift in the pain level. By the end of the nine minutes, the knee was moving ’round and ’round at a much more manageable pain level.

On the next visit, I had a friendly little competition going with the teenager on the table next to me. She had the same surgery a day before mine. So we gripped our green straps and pulled our knees back, trying not to grimace as our therapists measured our progress. I managed to reach 112 degrees, but the young one hit 115 degrees of bend.

After spending the entire weekend icing the knee, I figured I would hit those numbers easy at the next therapy session. ”107 degrees,” the therapist announced.

“You gotta be kidding me!” I said. “What number should I be at by now?”

“I’d like to see 120.”

“Fine, you want 120? I’ll give you 120.” It took several tries and a lot swearing inside my head, but I hit that magical number.

The body’s first instinct with pain is to react and withdraw. To get far away as possible from pain. To not have to feel it. But ironically, to heal from anything, to give birth to something new, pain is a necessary component to growth. This applies to just about anything in life.

Physical therapy is like life. The only way to heal, to rebirth, to move on– is by working through the pain that’s holding you back.

“We must embrace pain and burn it as fuel for our journey.” –Kenji Miyazawa

When Your Only Option is a Thong

Posted on December 14, 2011 by DeafMom

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It was one of those weeks. Dishes piled high in the sink. Couch cushions skewed all over, with one of them on the floor. Paperwork in a heap in the corner of the kitchen counter. Somewhere in the middle of the paperwork pile sat three envelopes. School registrations, I reminded myself. Gotta get those school registrations sent in.

But first, I needed to jump in the shower and get myself dressed. The oldest kid had to be at football camp in 40 minutes. It was a 25 minute drive to his school. I quickly showered and headed off to the closet to grab some clothes. One look into the underwear drawer and I knew I was in trouble. All I could find were a large pile of bras, a misplaced sock and a bathing suit. My eyes turned to the laundry basket–it was over flowing. I was clearly out of underwear.

Scrounging through the drawer, I discovered bras that were past their prime. I kept them around for those painting projects that never seemed to materialize. You know, for those days where you don’t want to have a painting accident and mess up the pretty lace bras.

Digging through the underwires, my hand struck paydirt.

A thong.

Yes, a thong. A tiny scrap of material from my college days. I don’t think the hubby even remembered that I had one. Heck, I didn’t even remember that I had one.

Now keep in mind, I was zillions of pounds lighter in my college days. But here’s the thing, a thong is very forgiving of the flesh. Since there’s barely anything to cover, anyone of any size can get away with wearing them. Sure enough, I was able to slip the thing on and quickly got dressed.

By the time I dropped the kid off at school, I remembered why the tiny scrap of material went unused. It’s like having a permenant wedgie when you’re wearing it.

I went home and did laundry. The underwear drawer was quickly filled.

The thong went in the garbage.

This post originally appeared on the Chicago Moms Blog.

Wanting to Be Hearing

Posted on September 20, 2011 by DeafMom

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So, before we get into today’s post, go mosey on over to Bad Words and read Tulpen’s post: Either Way. Then come on back over and let’s talk.

Tulpen’s son, Owen, told his mom, “Don’t want to be Deaf. Want to be Hearing.”

I can relate. That’s pretty much how I felt– from the time I first began losing my hearing in elementary school until I became deaf. I can remember being able to hear–I would crawl into bed and listen to my dad tell me the story of Scamp and Tiny– two dogs that went on adventures all over town. I can also remember the day that I stopped crawling into bed– I could no longer understand what my dad was saying in the dark. I had become sick with a high fever for nearly a week and shortly after that, I had the “hard of hearing” label tacked on. I was never able to use the phone after that. The words that entered my brain were pretty much scrambled and I resorted to lipreading.

I hated the hearing aid. Hated the daily struggle to access communication. I often wished that I had normal hearing. I held back on life, thinking that “if only I had normal hearing I would do this.” Or that.

In elementary school, the kids on the bus teased me, sometimes mercilessly. I kept my eyes straight ahead or I sometimes buried myself in a book on the rides home. My best friend, Pattie, defended me on the bus. Twelve years ago, I received a letter out of the blue from one of my tormenters, asking forgiveness. He had become a born-again Christian and the teasing had weighed heavily on him over the years.

I had long ago forgiven, I just didn’t know it. The forgiveness came from the journey to acceptance– in the form of a severe whack on the head when I tripped on a wake while barefoot water skiing. I was nineteen. I could no longer hear anything without a hearing aid perched in my ears. But it turned out to be the very best thing to happen to me. I finally, after years and years of battling, finally accepted the whole me. I embraced the new journey and my world filled up with new deaf and hard of hearing friends and American Sign Language became a part of life. As for me– I was deaf– and it was okay.

Then one by one, my kids started collecting audiograms. David was nearly three, Lauren was four, and Steven was two– and then we started killing more trees and collecting IEP paperwork. And like Owen, each one of my kids has had their days when they wished they had hearing in the normal range. And when they expressed that, my heart always did a little blip. More often than not, it was a cycle– a season in their life– where they became more self-aware, or they matured, or a struggle of some kind would trigger it. The rest of the time, all was well–they would settle back into being comfortable and happy with life again.

And it might surprise some of you to know that I even have moments of self-pity when I wish I could hear. I had one of those moments while sitting at a banquet after a tournament this summer– and tears started to fall. My friend Sharon was my interpreter that night and I told her what I was feeling. I was reflecting over the whole summer of tournaments. “I wish I could hear the announcements, the conversations that flow around me, the jokes that get told on the boat– I miss out on all that stuff. And sometimes I can’t lipread some of the folks I meet…” I whined. Yes, I whined.

We are human. In moments of humaness (is that even a word?) all of us wish for something else. Thinner, taller, younger, smarter, richer–whatever it is, that darn grass is always greener somewhere else. But ultimately, we have to cultivate that little patch of green we’re standing on. We have to bloom where we are planted. Corny–yes–but it’s something I live by.

Oh, and those announcements that I wished I could hear? Well, at one of the tournaments, another barefooter said to me, “You’re lucky you can’t hear Dave (the announcer) – he goes on and on and on– sometimes I wish I could turn my ears off.”

The grass is always greener…

Karen Putz in Ability Magazine

Posted on August 24, 2011 by DeafMom

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Check out the current issue of Ability magazine, featuring “Standing on Her Own Two Feet,” which chronicles my return to barefoot water skiing. The story also features Keith St. Onge, but unfortunately, they left out Judy Myers! It was the hubby who found the link to the Today show segment that lead me to Judy Myers, who lead me to Keith and the World Barefoot Center. Life did a 180! Thank you, Keith, Judy and Joe– for turning it all around.

To receive a free digi-issue of Ability magazine, click the “Like” button on Facebook: Free Issue of Ability Magazine

How I Wash My Vibram Five Fingers Shoes

Posted on July 17, 2011 by DeafMom

About a year ago, I heard about Vibram Five Fingers shoes from a couple of runners on Twitter. I was curious to see how those shoes would fit because I have extra-wide feet with bunions, and finding shoes is a nightmare for me. I picked up a pair at the Naperville Running Company and they fit– literally–like a glove. I pretty much do everything and anything in my Vibrams. Steven, my youngest kiddo, took to stealing my Vibrams every now and then and he wore them for track during the spring. When I dropped him off at camp today, I saw that he once again claimed my Vibrams on his feet.

The usual procedure for washing Vibram Five Fingers is to simply toss them in the washing machine with some towels and they come out spanking clean again. I took my Vibrams to the river with me last week and found another way to wash ‘em:

Missing My Dad

Posted on July 2, 2011 by DeafMom

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The tears were streaming down my face when I finally banged the clamp off of the old battery. The boat wouldn’t start and the old battery had somehow overheated last summer and needed to be replaced. I had a feeling that the problem wasn’t the battery– I suspected it was the starter– but I wasn’t sure. And the one person that I always counted on to help me, was no longer here.

The kids looked at me in surprise. ”What’s wrong, Mom?”

“I’m just thinking about Dad,” I explained. ”Every time there was something wrong with the boat, he was the one to fix it or to tell me what was wrong with it. I’m just missing him.”

This week, there’s been one thing after another wrong with the boat. The battery clamp broke off and I had to run to town to buy a new one. The starter was indeed the problem, and I ended up writing a check to the mechanic for that one. “Oh by the way, Mom, the gas gauge doesn’t work,” David informed me just before pulling me for a run earlier in the week. I fixed that. “Mom, the water pump isn’t working and the boat has some water in it,” he told me tonight after another barefoot run. Joe fixed the broken wire and got the pump running again.

Lately, I’ve been missing Dad a lot. The house seems empty without him. If you recall my earlier post about seeing a red-winged blackbird, then you know the story of that connection with my Dad. Last week Friday, I was doing a clinic up at the Blue Moo Lake and I was feeling a little bit anxious about being able to put together a trick run. I had struggled on the water earlier in the week at Cedar Lake and had not yet even practiced a trick run. I was floating in the water, waiting for the boat to return and a lone bird landed on the bank. I turned to take a closer look and saw that it was a…

Red-winged blackbird.

I threw my head back and laughed.

My First Barefoot Tournament

Grief Out of Nowhere

Posted on May 25, 2011 by DeafMom

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It has been a long, cold, drawn-out spring in Chicago, so when a beautiful, warm day arrived, I decided to ~~run~~ walk on the prairie path in Naperville. I didn’t get very far with running– there was a heaviness inside that I couldn’t shake. I slowed to a walk and soaked in the beauty around me. I tried to figure out why I was feeling so weighed down. I recognized that heaviness– it was the familiar feeling of stress. So many changes had occurred in such a short time. The countless trips to Michigan and the loss of my dad. The change from full time employment to part time. The additional projects I had taken on.

Out of nowhere, I started to cry. At first, I didn’t even know why I was crying. I was thankful for sunglasses and the mostly deserted path. I struggled to sort out the jumble of thoughts that were racing through my mind. The one that stood out was this: I missed my dad. I hadn’t slowed down enough in the last several weeks to allow myself to feel the loss.

A bird landed right in front of the path I was walking. When I saw the bird, I started to laugh. It was a red-winged blackbird. Because you see, up in Michigan, we had a red-winged blackbird that used to dive toward Dad’s head whenever he was out in the yard near the shore. And in all of my years in Illinois, I had never noticed a red-winged blackbird around me.

I dried the tears and started to run again.