Congenital Deafness - What is it?

Congenital deafness is the term used to describe severe hearing loss that it is present at birth. ‘Severe’ is defined as 90 decibels or more.

Congenital deafness is a permanent condition, but can be greatly assisted through hearing aids, Cochlear implants and speech therapy.

How is it diagnosed?

All babies now have a hearing test soon after birth or certainly by 6 weeks of age. The electronic test is very accurate and is not dependent on the severity, so a child with congenital deafness is generally diagnosed early.

Once a concern has been identified a paediatrician, audiologist and ENT (Ear, Nose and Throat) surgeon will be consulted and further tests may be undertaken to ascertain the type of deafness, and to identify any genetic causes.

Congenital deafness can also be discovered in association with other conditions such as Down’s Syndrome and Cleft Palate.

What does the treatment look like?

Consultant Paediatrician at London’s Great Portland Street Hospital and NurtureFirst’s Chief Medical Officer, Dr John Fysh, explains: “The development of treatments such as Cochlear implant has changed the outcome for children with congenital deafness dramatically, and I have no doubt there will be more developments in the future – both in terms of treatment and prevention. For now, long term, it would be hoped that the child can be supported in their development to the point where they can comfortably integrate into mainstream school - with or without special teaching assistance.”

Options available (from the NHS, charitable and private sources to support children and their families coping with this condition include:

  • Family support, advice and information.
  • Communication support (spoken and/or signed), to help deaf children develop their listening skills and a spoken language.
  • Pre-school education support
  • School education needs assessment and provision


Approaches to maximise the hearing a deaf child may have include:

  • Hearing aids
  • Radio aids (one person wears a transmitter and the child wears a receiver)
  • Cochlear implants

Communication options for the severely deaf generally combine:

  • Lip reading/speech reading guidance
  • British Sign Language (BSL) is a visual language
  • Finger spelling: each letter of the alphabet is indicated by using the fingers and palm of the hand.


  • Around 50% of cases are deemed to be due to genetics. These may or may not be part of a recognised genetic syndrome - e.g. Turner syndrome and Klinefelter's syndrome
  • Congenital deafness may be associated with certain syndromes and intra-uterine infections, though the cause is not always known
  • Intra-uterine infections account for approximately 8% of congenital deafness and might include: TORCH (toxoplasmosis, rubella, CMV, herpes) and HIV
  • An estimated 12% of cases are associated with perinatal causes. Examples include prematurity and/or low birth weight, birth asphyxia, severe jaundice and sepsis.
  • 20-30% of deaf children have no definite known cause

Where to go for support

The NHS and Education Department provide excellent care, but parents of a child with this condition would inevitably be involved in considerable extra expense resulting from time and travel to attend numerous appointments over several years. Families may also wish to build on the treatments the NHS can offer, adding extra therapies or communication support (such as signing lessons for the child and family members, or speech therapy).

‘Having an insurance policy in place before the child is born means all this can be taken care of, without the significant impact on the family’s financial circumstances that is so commonly reported,’ explains Dr Fysh, EmbryoCare’s CMO.  ‘This is an emotional time and there is so much to consider when a baby is born deaf, the last thing the family needs is to be concerned about how they will cope with resulting expenses.’

NurtureFirst Future Family Insurance is a unique policy that provides expectant mothers with added assurance from the 20 week scan* through to their child's second birthday. NurtureFirst aims to ease the financial impact of unforeseen costs that can result from covered conditions - including Congenital Deafness.

*NurtureFirst's policy can be accessed following a clear 20 week scan from £9.13 per month.

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NurtureFirst is a Trading Name of Future Family Limited. Future Family Limited (Company Number 07828098) is an Appointed Representative of OneGlobal Broking Limited. OneGlobal Broking Limited (Firm Reference No. 311657) is authorised and regulated by the Financial Conduct Authority.


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