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Perceptions of Birth Defects Around the World

Approximately eight million children across the globe are born with a birth defect each year. In the UK, treatments for children born with birth defects are readily available, with the majority being provided for free on the NHS. However, for many other countries around the world, it is not quite that simple.

Below are four examples of birth defects which effect children around the world, alongside an overview of some of the key differences in how these conditions are viewed by people in different regions.

CLEFT LIP AND PALATE

Susannah Schaefer, CEO of children’s charity, Smile Train – which provides 100% free cleft repair surgery and comprehensive cleft care for children in the developing world explains:

“A cleft lip occurs when the lip does not fuse together properly during foetal development, and a cleft palate is when the roof of the mouth (which is made up of both the hard and soft palate) does not fuse together properly. Babies born with cleft lip and/or palate will often struggle with eating, breathing and speech development, so cleft surgery is extremely important.

Babies are born with clefts everywhere in the world. This includes the UK and other westernised countries. In the UK you rarely see children with untreated clefts because treatment is offered for free on the NHS and is carried out very soon after the child has been born.

However, in the developing world, where it is estimated that more than 170,000 new babies are born with clefts each year, many children are not as fortunate. Families often do not have access to quality healthcare services, or the resources to pay for proper cleft treatment, which is why it is more common for the condition to go untreated in these countries.

Heartbreakingly, children in developing countries with untreated clefts are forced to live in isolation and are often shunned by their communities. For example, every baby born in Uganda with a cleft is given the name ‘Ajok’ which means “cursed by God,” with some newborns abandoned right after birth or even killed because of their clefts.

The good news is that children with clefts all over the world can be helped with surgery that can cost as little as £150 and can take as little as 45 minutes. Smile Train provides free training and education for local doctors and medical professionals in over 85 developing countries, like Uganda, to help them perform cleft surgery and provide comprehensive cleft care within their own communities 365 days a year. As a result of this highly effective approach, Smile Train have been able to transform the lives of more than one million children to date, by giving them the power of a smile.“

DOWN SYNDROME

Down syndrome is a hereditary disorder which arises from a chromosome defect, causing visual and hearing impairments, and physical abnormalities including short stature and a broad facial profile. There is also some degree of intellectual impairment however, most children will be able to do everything that children without the condition can do.

In the UK there are approximately 40,000 people living with Down syndrome. Whilst there is no treatment for Down syndrome, there are several ways to help children to develop into healthy and independent individuals. This includes, access to good healthcare, intervention programmes from an early age, supportive parents, and a good education.

Unfortunately, children born with Down syndrome in other areas of the globe are not as lucky. Children are shunned by their families and communities in less modernised countries like sub-Saharan Africa, as the condition is believed to be caused by evil spirits and witchcraft.

JAUNDICE

Neonatal jaundice is one of the most common conditions to affect new born babies. It arises due to the build-up of bilirubin - a yellow substance produced when red blood cells are broken down – which causes yellowing of the skin and the whites of eyes in babies in the first few weeks after birth.

In the UK, newborn jaundice isn’t usually a cause for concern as the symptoms normally pass within 10 to 14 days. Treatment will only be recommended if tests show a baby has very high levels of bilirubin in their blood, as there is a risk the bilirubin could pass into the brain and cause brain damage – a complication known as kernicterus.

Kernicterus is now extremely rare in the UK due to the advanced medical facilities and medical specialists, however this is not necessarily the case in other countries.

As people in developing countries often cannot afford proper screening or treatment tools, such as phototherapy, they are unable to ascertain the levels of bilirubin within children. As a result of this, jaundice and kernicterus are often fatal for infants in the developing world.

SPINA BIFIDA

Spina bifida occurs when the bones of the spine (vertebrae) don’t form properly around part of the baby’s spinal cord. Children born with spina bifida usually have an open lesion where significant damage to the spinal cord occurs, and this can lead to problems such as paralysis of the legs, bowel incontinence and/or loss of skin sensation.

In the UK, a number of different treatments can be used to treat symptoms or conditions associated with spina bifida. Because children in the UK receive appropriate treatment and support, they are therefore more likely to survive well into adulthood.

However, in other less developed countries the children are not as lucky. In Kenya, for example, children with Spina bifida are often incontinent and are therefore shunned by most schools, denying them the right to education. As with all people with physical challenges, even simple matters like transport and access to buildings become very difficult.

This was posted in Bdaily's Members' News section by Scott Barrett .