Congenital Blindness - What is it?

Congenital blindness does not necessarily mean a complete lack of sight. If a baby is born with permanent and irreversible, lack of – or severely impaired – vision they are considered congenitally blind. 

This is a distressing diagnosis for any parent to hear, but it is important to note that children born without their sight generally become highly skilled at using their other senses and, given the right developmental support, will live a happy and independent life.

How is it diagnosed?

Parents will often be the first to notice that their child has problems with their vision. Babies may be more still or quiet because they are listening carefully, they may not fix on or follow an object with their eyes and are slow to smile. If you are concerned about your child it is important to see your doctor and be referred to a specialist as soon as possible.

The routine 6 six week check is the most common point of diagnosis for congenital blindness. Prior to this visual impairment may simply be down to delayed visual maturation and can resolve itself.

If a doctor is concerned about your child’s vision they would refer them to a Paediatric Ophthalmologist who will confirm the diagnosis and options for treatment or support.

What does the treatment look like?

Surgical solutions are not generally an option in these circumstances, however an infant may require vision aids and will almost certainly benefit from rehabilitation and skills development. A team of specialists will work with the child and their family to give advice on speech development, reading skills, how you might adapt your home, and offer stimulating options to encourage them to thrive.

The loss of sight is likely to have a significant impact on overall development since there is no impetus to reach for a toy a child cannot see; or to respond to faces; to smile or even move. Multisensory enhancement and supporting physio can be vital, ensuring that the child develops the self-confidence to explore and participate in everyday activities.


It is not always possible to identify a definitive reason, but some of the more common causes in the developed world include:

  • Damage to the brain due to lack of oxygen during the birth (birth asphyxia or hypoxia)
  • An infection during pregnancy (e.g. rubella or toxoplasmosis)
  • Very premature birth
  • Intraer-uterine infections

How NurtureFirst could help

With a lifelong diagnosis such as this, the NurtureFirst financial support can provide a vital bridge to help families cope. From a financial perspective, the lump sum payment makes funds available for additional complimentary therapies, childcare for other siblings whilst parents attend appointments, to cover loss of earnings, travel expenses and any equipment or aids the child may need to enhance their development. In addition, the RedArc team of nurses are available free to all policyholders, regardless of whether a claim has been made, and can provide emotional support, practical medical advice and even arrange second opinions and specialist support.


Where to go for support

There are a number of support groups available that provide a wealth of information and experiences of other parents who have been through a similar experience.

What are the best charities that support people and families coping with this condition?

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 Blindness.

*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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