CHILDREN AND DEAFNESS

 

AGE OF DIAGNOSIS

Each year, around 840 children are born with a permanent hearing impairment. Until recently, around 50% of these children were not identified until 18 months old, with 25% still left undiagnosed at 3 years old. Late diagnosis can have a devastating effect on language acquisition, communication development, confidence and social skills, which can last a lifetime (16)

REACTIONS TO A DIAGNOSIS OF DEAFNESS

Fewer than one in ten deaf babies are born to deaf parents. For many babies of this small minority, the diagnosis ellicits a positive reaction from the parents who welcome a baby alike to themselves,, however, when a deaf baby is born to hearing parents, the reaction is less likely to be positive.

Hearing parents are said to experience feelings closely related to bereavement and a sense of loss- that the hearing child they were expecting has been taken away and replaced by a deaf child.(12)

"From deep down inside I felt the tears welling. I had lost Sarah. Lost the Sarah I knew. Sarah was deaf!" (12)

This model suggests that parents go through a number of stages more often associated with bereavement - denial, guilt, depression, anger and anxiety - before acceptance takes place.(12) However, not all of the feelings that these parents experience may be negative, there are some positive aspects to the diagnosis:

Upon diagnosis parents my experience relief owing to their concerns being taken seriously- sometimes this only occurs after long periods of anxiety.
Relief may also be attributed to the parents having previously realised that their child was deaf prior to diagnosis and the diagnosis means that action can now be taken.
Relief may be experienced due to parents perception of deafness to be less serious than other forms of disability, such as severe learning difficulties.
If a child has been seriously ill , perhaps owing to meningitis or prematurity, then deafness may been seen as minor when compared with the possibilty of the child dying.(12)

However, when diagnosis takes place in screening shortly after birth the reaction of the parents is likely to be less positive owing to the lack of fore-warning of the diagnosis, the lack of bonding time between the parents and child, birth and the period of time following are particularly vulnerable for mothers; parents may have no suspicion of their baby's condition and the diagnosis is likely to be a much greater shock. On the other hand, Yoshinago-Itano and Apuzzo (1998) found that parents of babies diagnosed early welcomed the opportunity to get to know their child as deaf right from the early months, rather than believing them to be hearing and then having to make the change to seeing them as deaf. Some studies have asked parents of deaf children who were not part of a newborn screening programme, if they would have preferred their babies to be diagnosed earlier, soon after birth. These report that the vast majority of parents are in favour of earlier diagnosis (see, for example, Watkin, 1995). This is a positive indication, although it cannot be conclusive, as it would be impossible for parents to tell what it would really have been like, and whether there would be disadvantages as well as advantages.

Whilst it is undeniable that for many parents diagnosis of deafness is a very distressing event, it is important to remember that the diagnosis is not always a disastorous event.

Below are some common questions that hearing parents have relating to deaf children. This is not a comprehensive list of questions and there are many different answers to each question. For more information from other sources go to the 'links' page.:

PARENTS OF DEAF CHILDREN

CHOOSING THE RIGHT COMMUNICATION METHOD FOR YOUR CHILDREN

Some parents may decide to focus on the development of oral communication skills for their child through the use of hearing aids and lip-reading and others may decided to either use sign language exclusively, or incorporate sign language and fingerspelling with oral communication. This is a huge and very difficult decision and the choice varies from individual to individual depending on the child's needs- though help in making this decision is available from organisations such as NDCS. (8) However, the most important consideration when deciding on a method of communication is to pick a method that works for you, your child and your family.

WILL A DEAF CHILD BE ABLE TO COMMUNICATE WITH OTHER CHILDREN?

Yes. Children learn to develop their own way of communicating effectively. This needs encouragement from their family. Families can be tempted to communicate for their child but it is important to let your child become independent and develop their own communication skills. (8)

I KNOW MY CHILD IS DEAF- SHOULD I BOTHER WITH ORAL COMMUNICATION?

Yes. Now you know that your child is deaf it is more important than ever that you and your family keep talking and communicating to help develop language skills. You might also consider using gestures or signs as an additional method of communication. There are several key tips to consider when communicating with your child. (8)

I'VE BEEN TOLD THAT MY CHILD HAS SENSORI- NEURAL HEARING LOSS. WHAT DOES THIS MEAN?

Sensori-neural hearing loss, or nerve deafness, is hearing loss in the inner ear. This is usually means that the part of the inner ear called the cochlea is not working properly.

HOW DO I KNOW IF MY CHILD IS DEAF?

The Newborn Hearing Screening Programmes (NHSPs) in England, Scotland and Northern Ireland and Newborn Hearing Screening Wales (NBHSW) are introducing the screening tests, which should be available very soon.(13)

How does the screening test work?

The screen involves two simple painless tests to see if there is a need for further investigation. These are called the Otoacoustic Emissions test (OAE) and the Automated Auditory Brainstem Response test (AABR). For more information on these tests visit: the National Deaf Children's Society at:

http://www.ndcs.org.uk/information/newborn_hearing_screening/

Why do we need a new screen for deafness?

Currently, the screening test used for hearing in babies is called the Health Visitor Distraction Test (HVDT) or Infant Distraction Test (IDT). Babies are usually screened at 7 or 8 months old.(13)

The test involves a health visitor generating sounds from a source not visible to the child and then watching to see if the baby reactsto the noise. However this test is not pefect and factors such as the child using other senses to 'pass' the test can cause a problem.An example of this may be the health visitor wearing perfume which the child can smell, or the child may see a shadow. In addition, the baby must be old and strong enough to turn towards the sound made by the health visitor.(13)

Research into the effectiveness of these screening tests have shown varying results. This means that often deaf children have only been identified late with around half of children with a permanent hearing loss not identified until 18 months old and a quarter not identified by three and a half years old.(13)

Why is late identification of deafness a problem?

Late identification of deafness may have a massive effect on the development of the babys language by delaying the establishment of effective communication. Consequently, long term impacts on their social and educational development may be seen.

In America research has been carried out to show that a deaf child can develop language at the same rate as their hearing peers if: the deafness is identified by the age of six months and an early intervention and support programme is provided.(13)

Hearing screenining is provided to babies about whom there are a number of high risk factors. The test is conducted very soon after birth.. The factors include:

  • a family history of deafness
  • cranio-facial abnormalities
  • exposure to drugs which damage the hearing system
  • spending more than 48
  • hours in a Neonatal Intensiver Care Unit (NICU) or Special Baby Care Unit (SBCU)

  • Many deaf babies, 30% to 40% in fact, to not have any known risk factors meaning thatthey are not tested at birth. This means that many deaf babies are not diagnosed with the present screening tests.(13)

    As 90% of deaf babies are born into families with no history of deafness, this early support is vital. The majority of parents have no experience of deafness. Early identification, followed by a good early intervention programme can make the process easier for the family and lead to better outcomes for the child. The early intervention can involve a range of professionals, including audiologists, teachers of the deaf and speech and language therapists. It can also include contact with other parents and deaf adults.(13)