Congenital Deafblindness

The word congenital means “born with” or “present at birth”, so congenital deafblindness is a term used when someone is born with difficulties hearing and seeing.

There are many known conditions and causes which are discussed in “About Deafblindness”. Rubella (German Measles) during pregnancy was once the most common cause of a baby being born Deafblind. This has decreased significantly since vaccination programmes have been introduced. Babies born very premature, with cerebral palsy or with genetic conditions such as CHARGE or Down Syndrome are now more likely causes.

The term congenital deafblindness is also used when someone is not born deafblind, but becomes so, early in their development, before they have learned to communicate with speech, sign language or another form of communication. This may happen when a baby contracts a disease or suffers an injury that results in loss of vision and hearing.

Deafblindness is not the only term to describe the combination of a vision and hearing impairment. The terms dual-sensory loss and dual-sensory impairment are also used to describe deafblindness. The terms multi-sensory impairment and multiple disabilities may be used when a person has disabilities that could include hearing and vision impairment.

Some consider Usher Syndrome to be a congenitally deafblind condition, because a person is born with the genetic condition that causes them to become deafblind as they reach adulthood. However, as the impairment of both hearing and vision does not occur at birth or before communication has developed, Deafblind Information considers Usher Syndrome in the “Acquired” section of their website.

Congenital deafblindness poses challenges for the individual, for those who nurture them, who provide their medical and health care and for those who educate them. These challenges can be faced. Babies born deafblind will grow and learn. They will become children who will grow and learn. They will become adults who will continue to learn. When those who come into their lives want to understand the impact of vision and hearing impairment and how life can still be experienced and enjoyed in ways that don’t require fully working eyes and ears, then we open a door for them and for ourselves. No-one promises that it will be easy, no one can be precise about what to expect, but you can make it worthwhile, you can make a difference and so can they.

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For Families & Carers

Providing information on deafblindness, relevant to your caring role using everyday language

Photo courtesy of: Maddie Garvue (http://www.caringbridge.org/visit/maddiegarvue)

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For Professionals

If you work with a child, or adult, born with a diagnosed or suspected hearing and vision impairment, you will find information to increase your understanding of the options you can offer and the support you can provide

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