Rachel Chaikof

Rachel Chaikof (born 1987) is an American cochlear implant advocate who lives with Usher Syndrome type 1F, which causes deaf-blindness. Born to a hearing family, she was raised with exclusively oral methods, and at age two and a half she became one of the first 200 pediatric recipients of a cochlear implant in the United States during a clinical trial before the device was approved by the FDA for use in children. Mainstreamed in school, she was hailed in oralist circles as a cochlear implant success story, being the 1994 poster child during better hearing and speech month and was featured in various publications as an example of what cochlear implants could do. Nevertheless, she had to go through intensive speech therapy until 1996. Eventually she started cochlearimplantonline, a website focused on promoting cochlear implants and oralist methods, and later volunteered for the Peace Corps in Cameroon for two years.
Early life
Chaikof was born in Boston in 1987 to Melissa and Elliot Chaikof, both of whom are hearing. Newborn hearing screening was not standard practice at the time, so her parents did not know that she was deaf immediately. Her mother first suspected that she was deaf when she wasn't startled by a door slamming. The pediatrician initially dismissed her mother's concerns, but eventually when she was two months old she received an ABR test, which showed that she had bilateral severe-to-profound hearing loss in both ears. It was not until years later that her parents learned that the cause of her deafness was Usher Syndrome; at the time, they had been lead to believe that a virus during her mother's pregnancy was the cause. Her parents did not want her to sign, but they had her fitted with body-worn hearing aids when she was only three months old. A subsequent test when she was ten months old showed that she had a bit more residual hearing than expected, and soon she was given behind-the-ear hearing aids. After her parents learned about the Auditory-Verbal method from a speech center in Pennsylvania, they enrolled her in an Auditory-Verbal program in Gloucester. However, she did not do well in the program, since her residual hearing rapidly deteriorated to the point she was completely deaf by the time she was one and a half. After that, her parents continued to pursue an oralist approach through visual and vibrotactile methods. She continued to undergo speech therapy, and when she was two her parents started to learn more about the cochlear implant, which was a fairly new technology at the time. After learning that some users heard more than static, her parents quickly developed interest in getting her one. In October 1989, she went to the New York University Medical Center, which identified her as a candidate for the implant and introduced her parents to other children from a clinical trial who were implanted. In December that year she received the multichannel Nucleus 22 implant from Cochlear Ltd as part of a clinical trial on 200 children before the device received FDA approval for use in children.
Cochlear implant usage
When Rachel's cochlear implant was activated several weeks after the surgery, she cried, which her mother was elated about because it meant she was hearing. While her speech with the implant was better than before, it still progressed very slowly. After her family moved to Atlanta, Georgia, she began seeing a new speech therapist, who worked with Rachel for several more years. In addition to weekly speech therapy sessions with a professional speech therapist, her mother also worked with her daily on her speech. Having made progress over time and being a student in a mainstream school, she was prominently featured in 1994 Hearing and Speech month publications that espoused the benefits of hearing technology. Being the Better Hearing and Speech Month child of the year, she was featured on a poster with jazz musician Lionel Hampton, where they were playing the xylophone. Eventually in 1996 she graduated from speech therapy. However, she went on to experience not one but two cochlear implant failures during her school years after completing speech therapy: the first was the total failure of her old Nucleus 22 implant in March 2003 where she could only hear static, which was replaced by a Nucleus 24 Contour that took ten months to get used to, followed by a less severe failure of the Nucleus 24 Contour replacement in February 2004. After the incident, she received bilateral implants, with the hope that if one implant failed she would still have hearing to use on the other side. After a prolonged recovery and mapping process, she was able to get used to the new implants.
Other activities and personal life
Having been diagnosed with retinitis pigmentosa in 2006 shortly before starting college, subsequent genetic testing showed that she had Usher Syndrome type 1F, the leading hereditary cause of deaf-blindness among Jewish Americans; Usher Syndrome is a rare disease that causes congenital hearing loss, poor balance, and slowly deteriorating eyesight to the point of blindness. Shortly before graduating from the Savannah College of Art and Design in 2010, she applied to join the Peace Corps. Initially her application was rejected due to her deafness, but the second time she applied she was accepted. She then volunteered for the Peace Corps from 2014 to 2016 in Cameroon, where she worked with people with disabilities and health education. As of 2022 she works at a global development consulting firm based in DC.
Her sister Jessica also has Usher Syndrome type 1F; due Rachel and Jessica's deteriorating eyesight, their parents started looking to the field of genetics to find a way to restore their eyesight, but as of 2022 no treatment to restore eyesight of people with the syndrome is available. In 2013 her parents took part in founding the Usher 1F Collaborative, a non-profit dedicated to financing research into treatment for Usher Type 1F, since there was very little existing research on it. While studies on mice and rats have shown some promising results but are still very limited, and further research is needed before a treatment to restore eyesight in humans can be developed.

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