Spotlight on Stem Cell
Research: Mixed Feelings
Karen Putz's teenagers
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? The answers were all over the place. Some would jump at the chance to restore hearing. Others were comfortable being deaf/hard of hearing and couldn’t imagine wanting to change that. 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.
Curious, I got in touch with the research team to find out more about using stem cells to restore hearing. The idea first came about from a casual conversation between auditory-verbal therapist 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 at the time. He was intrigued with Linda’s idea so he did some research and talked to several researchers about the possibility. .
Dr. Baumgartner came across research done in Italy that 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 (CBR) identified two babies to receive the treatment whose parents had banked their umbilical cord at birth. 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. “Using autologous blood, or giving people back their own blood products in this procedure, is safe.”
Once ten infants are safely treated, the team can request FDA approval for the second phase which will allow an increased dosage of stem cells. The third phase would include double-blind random trials. “I feel our 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 myself as a young girl who hid every sign of hearing loss, I learned to embrace a whole new world that included American Sign Language when I became deaf at nineteen. 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 of deafness 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 might 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--three of them lost their hearing as adults, and 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 is a mom of three deaf and hard of hearing teens and a board member for Hands & Voices. She blogs at www.deafmomworld.com and www.deafhhcareer.com and is a frequent contributor to the Communicator.
Families who are interested in participating in the clinical trial can obtain more information at: http://www.cordblood.com/hearingloss