Busting the spina bifida stigma

NABEELAH MOHEDEEN

A former Kewtown resident spoke about her life with the congenital defect called spina bifida, at a lecture held by the Association for spina bifida and Hydrocephalus at Islamia College in Lansdowne, last Wednesday.

The defect prevents the unborn baby’s spinal column from joining properly, leaving an opening in the spine, usually at the lower part of the back. This can be detected as early as 16 weeks during an ultrasound scan.

Caroline Bowers’ defect was discovered when she was born and she was not expected to live until the age of 16. She is now 31.

“I was born with spina bifida at a district clinic in Mitchell’s Plain where my parents stayed. As soon as they realised I had a birth defect, I was rushed to Red Cross Hospital. It was difficult in the beginning but when I turned 13, I actually became aware of my differences. It was a challenging time between 13 and 16 because I had to adapt to what is normal for me now,” said Ms Bowers.

She has had many operations, including one during which doctors placed a shunt in her head to prevent fluid accumulation on the brain; a hip operation; and an ankle operation. “My condition is not that severe, but I do have bowel and bladder problems which come with spina bifida. I was able to walk but I grew tired because of the dislocated hip so I was in a wheelchair when I was 13-years-old,” said Ms Bowers, who attended Astra School for the physically disabled in Montana and now lives in Bellville.

Ms Bowers is part owner of a water engineering company, which she runs from home.

She said people should not assume that those who suffer from spina bifida are less intelligent than other people.

“Some people perceive you as dumb or stupid because they see your head is bigger and your speech is slow, but I would like to say that we have our problems internally but we are not stupid or dumb. We can think for ourselves and do things for ourselves and we’re quite educated on how to look after ourselves. I want to say to the community, give us support and embrace us as part of the community,” she said.

According to Dr Karen Fieggen, a geneticist at Groote Schuur Hospital, 7.9 million children in the world are born with genetic or partial genetic birth defects every year. About 3.5 million children die before the age of five and the remainder survive with a life-long disability.

Babies who are born with spina bifida often have a lump visible on their lower backs which consists of spinal nerves, fluids, and meninges, a membrane that protects the spinal cord.

As a result, the spinal cord is damaged, so messages from the brain via the spinal cord to the lower part of the body are interrupted. This results in sensation lost in the lower body, including the bladder, which means a loss of bowel and bladder control and mobility problems. The overall effect of spina bifida is disability in the lower part of the body, which varies from child to child, depending on the level of damage on the spine.

According to Dr Fieggen, there is overwhelming evidence that suggest that folic acid taken before conception either as a vitamin supplement or through food fortification can lead to a reduction in the risk of having a baby with spina bifida.

She said one of the main causes of the spinal defect is mothers who have diabetes, which increases the risk significantly, or mothers who suffer from hypertension, as well as those who consume alcohol during their pregnancy.

Dr Fieggen expressed the importance of planning ones pregnancy so that one can look into family history for genetic defects and start the intake of folic acid on a daily basis.

Lieven Bauwens, secretary general of the International Federation for spina bifida and Hydrocephalus, has a brother who suffers from spina bifida.

He said the intake of 4mg of folic acid on a daily basis two months before conception can reduce the risk of the baby contracting spina bifida by 70%. He added that anyone of childbearing age should be taking 4mg of folic acid a day.

Mr Bauwens expressed how important it was for mothers to register their children with disabilities so that the rate of disabled children in the country can reflect accurately on the country’s database. “Children are stigmatised and hidden because of their condition. In some countries, mothers pay the nurses not to register their disabled children,” said Mr Bauwens.

“The government cannot plan accordingly if they don’t have the proper database,” he said.