Save our babies!
Alarming new data reveals that around 42 children are born with a birth defect each day in the UK.
A leading children's disability charity has called for urgent research action as alarming new data reveals that around 42 children are born with a birth defect each day in the UK; that's one in every 45 live births – and one in every 202 pregnancies leads to a termination due to foetal anomaly.
Newlife Foundation for Disabled Children has called for more investment in vital medical research and today launched its ' Save Our Babies' appeal, in the light of these new findings. The charity – which has funded over £14million of targeted research, leading to the discovery of around 50 genes responsible for birth defects – says that higher levels of investment are key to combating the conditions which lead to lost pregnancies and loss of ability and health in our babies.
The new data – published by BINOCAR (British Isles Network of Congenital Anomaly Registers) – also shows that a particular group of conditions affecting the abdominal wall is on the increase. Gastroschisis causes a baby's bowel to be formed outside of the body and Newlife has been leading research into this disturbing condition. Newlife has been in talks with the Luey Jacob Sharp Foundation – founded by Premiership footballer Billy Sharp and his partner Jade Fair following the death of their own son from the condition. The two organisations will be working together to fund further targeted gastroschisis research.
Newlife has also funded research into oesophageal atresia and lung malformations, which the BINOCAR statistics reveal are also on the increase.
Newlife's Save Our Babies appeal will focus its attention on funding vital UK research to improve understanding, diagnosis and treatment of such conditions and work towards prevention. It is appealing to individual donors to fund an hour of such research at £29, or a day for just £238. Newlife guarantees that 100 per cent of donations to this appeal will be restricted so every penny will go directly to fund this important work, with supporters getting feedback on the research supported.
The BINOCAR data is based on the recording of birth anomalies in six areas of the UK – North of England, South West, East Midlands and South Yorkshire, Wales, Wessex and the combined counties of Oxfordshire, Berkshire and Buckinghamshire. Newlife has been a long-time supporter of these registers, urging government to encourage their expansion throughout the UK as they are the only monitor of such public health knowledge and play a vital role in developing services to meet future need.
Monitoring of birth defects started in the 1960s, following the Thalidomide scandal, and provides key data on the conditions that are the biggest threat to child health and pregnancies.
The BINOCAR data shows that the South West of England appears to have a significantly higher prevalence of birth defects than other UK regions monitored, while the combined areas of East Midlands and South Yorkshire record much lower levels. Comparing the information to European registers shows the prevalence of birth defects in the UK is similar to other parts of Europe, although congenital heart disorders and urinary problems are noticeably lower in the UK.
The data also backs up previous findings that maternal age is related to these conditions. Mothers in the 25-29 age group have the lowest prevalence of all anomalies. It also shows that the prevalence is higher in the under-20s and significantly higher in women over 40.
In addition to its investment in medical research, Newlife provides information and equipment for disabled and terminally ill children across the UK, with families supported through its National Nurse Helpline – freephone 0800 902 0095. The charity is seeing an increase in the number of families needing help as more children are affected by disabling conditions and surviving.
The new data shows that 95 per cent of children with congenital anomalies now live past their first year. Newlife CEO Sheila Brown, OBE, said: "As treatment of these and other conditions such as childhood cancers, prematurity and infections are improved, we are pleased to see the infant mortality rate dropping. However, many of these children have on-going health and care needs and an increasing number of families are turning to Newlife to get the essential equipment their children need for every day life; items such as specialist cots, mobility aids, seating and therapy equipment. The charity is currently experiencing demand for around £2million of equipment a year – with the figure growing as statutory services cut their budgets.
She added: "Families know the real cost of not funding research, in seeing the impact of their babies' health and ability. For many whose children have life limiting conditions, research is their only hope."
Anyone who wishes to help Newlife combat such conditions through the Save Our Babies appeal should visit www.newlifecharity.co.uk or call freephone 0800 988 4640.
To view the BINOCAR report in full, go to: http://www.binocar.org
