The New Stem Cell Research for Hearing Loss

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

4 replies
  1. devans033@yahoo.com
    devans033@yahoo.com says:

    I find it troubling that anyone would have kids knowing they may pass on a deaf gene. My mother suffered hearing loss in the wound secondary to viral infection my grandmother had. She has always told me that she would never have had children if her loss was genetic, given what she went through as a child. I am also now hearing impaired due to job related noise exposure, which I’ve known for 10 years. I have found it very hard to come to terms with having to wear a hearing aid. It sucks; there is no other way to say it.

    • Lindsey
      Lindsey says:

      I am not deaf, but my 7 month old son is deaf. I was thrilled to read about the hope and possibility to restore his hear his hearing even though we will pursue implants while learning ASL. We don’t know the cause of his hearing loss, we’re still waiting on the genetics. I will say this, if it is genetic and it is JUST hearing loss, we will have more kids… Afterall, it is just hearing loss. We have no family history of deafness, but my husbands best friend is deaf and we live in a town with a vibrant deaf community. As a teacher, I can tell you this, if everyone said they would not have children at the possibility of passing down a gene that makes them different, I wouldn’t have one single student in my classroom. Everyone faces challenges… It may be hard for you, but that’s not the case for everyone. I didn’t know my son would be deaf, but if I had known, it wouldn’t have stopped me from having him. He’ll face obstacles, but who doesn’t? Did you miss the fact they come from a family with genetic deafness. It is a part of who they are, not something they have. She wants deaf kids just like I wanted hearing kids… Why? Because that is what we’re accustomed to. There are so much bigger things to worry about your kids having than hearing loss and believe me, I never would have said that until I had a child with hearing loss and sat in the waiting room of a childrens hospital, watching as kids with things much worse than hearing loss streamed in and out… That is what makes me know we were blessed with hearing loss and not something far worse.

  2. Fahad Ahmed
    Fahad Ahmed says:

    I’ve been reading on numerous periodicals, but have not found an update on the trials at Children’s Memorial Hermann Hospital in Houston. I’d love to know the progress and a status update on well being of the children. I wonder where to find such publication.

  3. Cathy carver
    Cathy carver says:

    I had a sudden hearing loss due to a virus three years ago. Do you think I might be eligible to get in a clinical trial somewhere? If you have any information I sure would appreciate it . thanks so much for writing this blog.
    Cathy

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