Temporal Bone Registry
Promotes Research

By Tamara Joyce-Wylie, Texas Hands & Voices

Let me start with a disclaimer: if discussions of mortality, death, organ donation or other such things tend to unnerve you, you may choose to skip this article altogether; although I implore you to keep reading if for no other reason than to challenge your feelings on the subject. If you are like me, with a fascination for medical subjects, research and other such endeavors, then I hope you will be as intrigued as I was when I first learned of the Temporal Bone Registry.

The circumstances surrounding my introduction to the registry indicates the malaise felt about such matters of death. First, I share a bit of personal history as frame of reference. I have adult-onset sensorineural hearing loss in both ears and I wear hearing aids. The youngest two of my four children had been recently identified as having hearing loss as well, yet all the currently available diagnostics had failed to indicate a cause, genetic or otherwise. During a visit to my otolaryngologist, he mentioned something about donating temporal bones to the Temporal Bone Registry for research. When I pushed him for more information, he was somewhat hesitant to share and suggested I search for it on the Internet. I honestly am not sure if his reluctance was because of his own lack of knowledge of the details or an aversion to discuss the often-uncomfortable subject of organ donation. Either way, he shared just enough to pique my curiosity.

I did follow his suggestion and found the website for the NCIS National Temporal Bone, Hearing and Balance Pathology Resource Registry, as it is officially called, or the Temporal Bone Registry for short. Thus began my journey of becoming a candidate for temporal bone donation.

In 1960, a program was established to encourage individuals with ear disorders to donate their temporal bones for research. A victim of rising costs and dwindling funds, the National Temporal Bone Bank program became virtually inactive by the late 1980’s. However, the importance of temporal bone research was still recognized and in 1992, the National Temporal Bone, Hearing, And Balance Pathology Resource Registry was established by the National Institute on Deafness and Other Communication Disorders (NIDCD). Housed at the Massachusetts Eye and Ear Infirmary in Boston and funded through grants from NIDCD and the National Institutes of Health (NIH), the Temporal Bone Registry is a non-profit organization charged with recruiting donors with hearing and balance disorders to donate their temporal bones for research after death as well as coordinating the procurement process and supporting projects related to temporal bone research.

Now that I knew what the Temporal Bone Registry was, the decision was mine whether to enroll as a donor. I have always been a huge proponent of organ donation, so the idea of sharing parts of my organic matter with the scientific community after death wasn’t too farfetched for me to consider. My husband, on the other hand, has always been very “skeeved out” (his words) by the thought of organ donation and just generally avoided all topics relating to death, so once I printed out the Donor Enrollment Forms and realized that I needed the signature of my next of kin, I knew I was in for quite a debate and better be prepared.

Him: “Why would they want your ear bones? They don’t work!”

Me: “It’s not ‘ear bones’, Honey! It is the temporal bone and associated structures of the middle and inner ear. And because they ‘don’t work’ is precisely why they want them! Because I have hearing loss, they can use my donation to help them study and hopefully better understand the causes.”

Him: “Will we have to pay for any of it?” (He is a man so you can be sure that cost would come up.)

Me: “No, Honey! The laboratory pays for any costs of procurement.”

Him: “Well… does it change the way you would look, after… you know?” (I told you, this stuff is hard for him to talk about.)

Me: “No, Honey! You can’t tell they did anything, and besides, I am not that vain now, why would I care then?” (My frail attempt at a joke to lighten the mood.)

Him: “Why do you want to do this?!”

Me: “It’s important for me to help other people with hearing loss if I can. Think about the girls. The researchers may find something with my donation that will help our daughters, or if not them, our grandchildren, or maybe not our family at all, but the other people that will face life with a hearing loss. Hearing loss is still very low incidence so they need every donation they can get in order to have the amount of samples needed to contribute to the different research projects.”

I could tell when I mentioned the girls and our future grandchildren, his position was beginning to sway. A couple of weeks after our initial discussion, followed by several more references sprinkled throughout our conversations, he suggested we go to the movies. I think it was divine intervention that he suggested the movie “Seven Pounds” staring Will Smith. Neither of us was familiar with the plot, but we both are huge fans of Smith and with four kids we don’t get to the movies often, so I was fine with his choice without really knowing what I was in for. I won’t spoil the story line in case some have not seen the movie, but let’s just say the door was wide open for a discussion about organ donation on the ride home from the theater. I think my husband finally realized how important the Temporal Bone Registry was to me and he agreed to honor my wishes. With a happy heart, I sent off the completed Donor Enrollment Forms within a few days.

The enrollment process was fairly easy. I try to keep up with our family medical records so I already had most of the information needed to complete the forms. I elected to donate an optional DNA sample as well and that kit arrived shortly after I mailed my enrollment packet. Just a few quick swabs inside my cheek had that package on its way as well. I received a donor card to carry in my wallet and I had a discussion with my parents and our teenage daughter regarding my wishes, should they be placed in the position of next of kin to give consent. Although the registry does accept enrollment of minors with parental consent, we have not yet registered the girls, mostly due to my husband’s reservations; however I have every intent of making them aware of the opportunity when they are old enough to choose for themselves. The benefit of registering earlier rather than later ensures that the researchers have access to more complete medical records and information.

Knowing that I have the potential to help further temporal bone research gave me back a little bit of the power that hearing loss has stolen; not that I feel powerless over my life, but the truth is I have no power over my hearing loss. My progressive loss is like a thief that sneaks up and steals away something precious that hearing people tend to take for granted, and I never know when he is coming or how much he will steal this time. This donation was my way of taking that theft and making it into a gift instead.

For more information about the National Temporal Bone, Hearing, And Balance Pathology Resource Registry, please visit their website at www.tbregistry.org