Congenital brain defects is an umbrella term for a range of brain disorders usually present at birth or diagnosed in early life. The human brain starts developing five weeks into a pregnancy (normal as opposed to assisted conception) and continues to develop until the moment of delivery.
Clinicians used to think that the human brain was fully developed at around 37/38 weeks of pregnancy. Research has shown that in the last weeks of gestation, the brain’s grey matter (the cells which store information, memories and skills) becomes denser and so children born prematurely may be at a disadvantage in terms of their development, compared with children born full-term.
If the development of the brain as the foetus grows is interrupted or affected by the poor development of other organs, the brain may not develop properly. Poor development of the skull, which protects the brain, may interfere with brain development in the foetus. Other risks might include antenatal infections, neural tube defects (the neural tube links the spine to the developing brain) which may lead to conditions such as spina bifida or in rare cases anencephaly (when no brain grows in the foetus). Anencephaly is more common in female foetuses and is sometimes diagnosed at post-mortem after a stillbirth.
Cerebral palsy is another congenital brain defect which may be caused by adverse events during gestation or delivery – or in rare cases may be genetic.
Congenital brain defects are still rare but there are now in place resources and health services which can offer care to a child affected and their family – as well as making sure that specialist educators and therapists are appointed to a team which will provide a multi-agency solution to caring for a child born with congenital brain defects.
Because children with brain defects may have a range of different symptoms – from problems with movement to epilepsy and hearing or sight problems – a team is usually put together by local healthcare providers and social services, as well as charities and other support agencies so that a complete care package is designed for each individual child and their family.
Families may have to pay for some services, however – especially if a child has special needs which may not fall within the remit of the local authority. For example, a family may feel that a certain type of therapy would be best for their child, but this is not provided by the local healthcare or social services. Some families go to court to win funding for their child in these cases.
A whole range of agencies and charities can help families with access to care for a child born with congenital brain defects and some of these include:
Support and advice for children with congenital brain defects or acquired TBI
One of the leading charities which offers advice and information to parents of children born with congenital brain defects is Headway.
Some of the other principal charities dealing with brain injuries in children include:
The charity Scope also provides information and advice to families whose children are born with cerebral palsy and other disabilities. The Scope website has information about the latest therapies available for those with brain injury.
The support group BASIC (Brain and Spinal Injury Centre, based in Manchester) offers a national helpline (0870 750 0000) and works with the Department of Health to advise on best practice in the treatment of brain injured patients in the UK. BASIC has been at the forefront of many developments in treatments for those with congenital brain defects and acquired traumatic brain injury (TBI).
The US website Kids’ Health also offers useful information about children with congenital brain defects such as cerebral palsy.
For mothers-to-be who want to know how to stay healthy before and during pregnancy, as well as information about babies with brain defects, the UK website Women’s Health can advise on a wide range of issues, including gestational diabetes and the foetus, congenital infection defects and structural and metabolic defects which may affect the development of the brain during gestation.
Other support groups which can help with specific needs such as mobility issues, rehabilitation or independent living include:
The care available to children born with brain defects may vary between local UK health authorities and education authorities – and in this case it may be that parents will need to consult children’s lawyers about issues like home adaptation and obtaining an SEN Statement to ensure their child receives the help they need with their education.
A full list of charities and support groups which can assist with children born with brain defects or with acquired traumatic brain injury is available at BrainInjuryExperts.co.uk.