Case number 2 is about a family that did not have any background knowledge of deafness. Their newborn child bilaterally failed its newborn hearing screening. The child was found to have Connexin 26 which leads to profound hearing loss. The parents want their child to develop a healthy identity through the Deaf community but are receiving mixed signals from professionals on which direction to take to educate and care for their child.
Hearing Loss – Meghan Clark
The child in our case failed the newborn hearing screening bilaterally. This means the child's age of onset is birth or prenatal. After more testing, he was diagnosed profoundly deaf. The results found Connexin 26 in the genetic testing. Connexin 26 is a protein found on the GJB2 gene. It is considered a congenital hearing loss which means it is present at birth either by hereditary reasons or other factors during birth. Because the family in our case has no history of deafness, their child’s deafness has to be because of factors prenatally or during birth. Connexin 26 is the most common cause of congenital sensorineural hearing loss, and 10% of all childhood hearing loss. Sensorineural hearing loss is when the cause of the hearing loss is damage in the inner ear or vestibulocochlear nerve.
Medical History – Mary Grace Barger
The child in this case has no other disabilities other than Connexin 26 that became a possible cause during the newborn hearing screening and was confirmed after genetic testing. Connexin 26 is a mutated gene that typically “cause[s] recessive hereditary bilateral deafness/hearing impairment, so-called DFNB” (Kemperman, 2002, pg.1). This means that the parents of the child could be hearing and have no history of deafness in their families, but the child’s gene mutation can cause deafness in mild to severe cases. This type of gene mutation is a non-syndromic hereditary form of deafness, meaning there were no other disabilities that would affect the child’s hearing loss. Genetic mutations like Connexin 26 accounts for around 50% of prelingual hearing loss including this child’s case.
Family History – Ellie S.
In this particular case, the family does not have any history of deafness or hearing loss. Without the family history of deafness, the family is does not have knowledge on what direction to go in that is best for their child. In this case, the baby developed Connexin 26 which is a genetic mutation, meaning that both parents were carriers of the Connexin 26 gene, but they were not affected. When the child was born, the baby acquired these recessive genes, causing the baby to have profound hearing loss from Connexin 26. The parents want the child to experience the Deaf community and develop a healthy identity with its deafness, but professionals are confusing the family and giving mixed signals on what is best for their child’s development.
Early Intervention – Gabriella Romanoski
When an infant is diagnosed with congenital sensorineural hearing loss, early intervention is crucial. The first three years of life are critically important for language acquisition, whether it be verbal or signed. According to the Individuals with Disabilities Education Act, or IDEA, the Early intervention program spans from birth to age three. During the time that the child is in Early Intervention, several different types of services are available free of charge (Early Intervention for Children with Hearing Loss). Because the family is a hearing family and may be unfamiliar and still coping with the diagnosis, they will likely depend heavily on the professionals for advice. The family needs as much information as possible so as to make the best decisions for their child. Early intervention services will help both the family and the child. Some of the services provided include speech and language skills for the child, information and education for the family about the child’s hearing loss and needs, and support and counseling for the family. In this case, where the family is left confused by the advice from the professionals, it is important to utilize the tools available through early intervention.
As newcomers to the Deaf community, information and education will benefit the parents in making the right decisions regarding their child. Early intervention also promotes personal connections for families with professionals, members of the Deaf community, and even other families with members who are deaf or hard of hearing. Concerning the parents wanting their child to have speech and auditory skills, early intervention can provide services to aid the child in achieving this; however, the mode of communication will ultimately be left up to the child and his/her preference. As previously mentioned, the window for language acquisition can have major impacts on the future of the child educationally, socially, and in many other areas of his/her life. For this reason, another service provided through early intervention for families of children who are deaf or hard of hearing is ASL classes. Because the child’s diagnosis was profound hearing loss bilaterally, the likelihood is that ASL will be more beneficial for language acquisition so as not to let the child fall behind during the critical years of language acquisition.
Modes of Communication- Meagan Phillips
While the parents of the child are hearing, it is important that they put the child first and make decisions based on what will benefit the child most. To them, it might seem like the easiest route would be to give their child a cochlear implant. However, if the parents made an effort to learn sign language and teach their child sign language then the child might actually have a higher understanding of language and ability to communicate at an early age. It is proven that the use of sign language is actually beneficial for language development in all children, hearing or Deaf. Even if the parents decided to give the child a cochlear implant, it is important that they encourage the child to learn and use sign language so that they are able to stay connected with their culture and other members of the Deaf community. Many Deaf individuals who are given a cochlear implants at a young age, decide they no longer want to use them in their adult life. If the child decides this, it is important that they have an understanding of ASL so they are able to communicate. Regardless of all this, the child might not even be able to receive a cochlear implant based of off medical reasons. If this is the case, then it is extremely important that the parents do learn sign language and give their child strong communication skills through the use of ASL. Children who do not have communication with their parents and families at home suffer so much because of it. In some cases, parents refuse to learn sign language because they believe its too hard or that they don’t have the time and their child will just learn to communicate at school. This is so detrimental to the child because they feel isolated from those whom they are supposed to be closest with and they also suffer when they start school because they lack the communication skills that should have already been developed.
School Placement – Gabby A.
Not having any history of deafness can make educational placement for a deaf child overwhelming. In this case, the parents want the deaf child to be exposed to the Deaf community and have a healthy identity despite the fact they do not have any deaf history. “Unfortunately, parents often lack the necessary knowledge and advocacy skills when confronted with a ‘one size fits all’ model by the systems that are there to support them” (Hand and Voices 2012). Early Intervention would be helpful in production of speech, but American Sign Language should be learned by the parents and used to communicate with the baby to help develop the language the brain needs for the child to be developmentally on track. The child could be placed in a Deaf School whether it be a Day school or a Residential school, where they are exposed to ASL and the deaf community, and also utilize speech therapy to assist in auditory and speech skill development. The child may learn to talk well after learning ASL and be able to use sign language as a support to speech after extensive early intervention. Admitting the child in a Day school or Residential school can help the child develop a healthy identity as a Deaf child and be immersed in the community in which they can easily communicate with other Deaf peers.